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How Crohn’s Disease Affects Your Mental Health and What You Can Do to Cope

By Crohn’s Disease, Mindfulness / SelfcareNo Comments

Living with a chronic illness can take a toll on your mental health. We understand how challenging it can be to manage not only the physical symptoms but also the stress, depression, and anxiety that often come along with a condition like Crohn’s disease. Feeling like you can’t rely on your own body can have a negative impact on your mind. It’s okay if you are struggling with your symptoms. You’re not alone. In this article, we’ll discuss the unique challenges that living with Crohn’s disease brings, how these can affect your mental health, and, most importantly, what mindfulness can do to help. Crohn’s disease and your mental health. Crohn’s disease causes chronic inflammation of the gastrointestinal tract –that’s the digestive passageway that leads from the mouth to the anus. It belongs to a group of health conditions known as inflammatory bowel diseases or IBDs. IBDs affect an estimated 3 million adult Americans. Crohn’s disease affects everybody differently, but common symptoms and side effects include persistent diarrhea, rectal bleeding, abdominal cramps, loss of appetite, fatigue, an urgent need to poop, and more. People living with Crohn’s disease often experience periods when symptoms are active, known as flares, followed by periods of remission when symptoms almost disappear. When Crohn’s disease symptoms do strike, they can come on suddenly, without warning. Living with these, often stigmatized, symptoms and their unpredictability can be stressful and overwhelming. Depending on others, feeling the sudden need to use the restroom and increased flatulence, for example, can make you feel insecure or fearful and lead to poor self-image. “Going out can sometimes feel overwhelming and give you so much anxiety, always wondering where the toilet is or worrying you will suddenly feel ill when you’re out.” Ally, Living with Crohn’s. It’s not surprising, then, that the rate of depression and anxiety disorders are common among people with Crohn’s disease. The gut-brain connection. Aside from the fact that many of the symptoms associated with Crohn’s disease can lead to feelings of isolation, frustration, and embarrassment, there is also a biological reason that living with Crohn’s can harm your emotional well-being. It’s called the gut-brain connection. The brain has a direct effect on the stomach and intestines and vice-versa. Just think about how nervousness can give you “butterflies” or watching a scary movie can feel like a “gut-wrenching” experience. Our gut collects messages and sends them to the brain, and the brain collects messages and sends them to the gut. If you’re living with Crohn’s, there’s evidence to suggest that this two-way communication may be disturbed, which can affect your psychological state or emotional response. In turn, stress, anxiety, or depression may trigger digestive symptoms. However, more research is needed to fully understand this. Coping with Crohn’s disease. Looking after your mental health is just as important as treating the physical symptoms when it comes to managing Crohn’s disease. There are several ways to feel more in control and optimistic about your ability to manage your condition, including: Committing to self-care. It can be difficult to be kind to yourself if you’re going through a hard time but slipping into self-loathing only worsens things. You are much more than your condition and have lots to offer, even on difficult days. Sticking to your treatment plan. Everybody’s experience of Crohn’s disease is different. Working closely with your doctor to create and review a treatment plan that works for you is important. Moreover, sticking to your treatment plan can help you avoid flares and improve your overall quality of life. Paying attention to your diet. Being thoughtful about what foods you eat can help replace lost nutrients and promote healing. Furthermore, becoming aware of what foods help to ease your symptoms vs. what foods act as triggers can help you to gain more control over your condition. For example, you may find that soft, bland foods cause less discomfort than spicy or high-fiber foods during flares. “A normal diet during a flare-up can make diarrhea and stomach aches worse, and some foods in particular can be linked to the symptoms.” Jonna, Sidekick Health coach. Regular exercise. Doing a little exercise when you can – even if you start with a few minutes a day – can make you feel better and improve your sleep hygiene. Increasing physical activity levels can help with fatigue too. “I’d built up a lot of negativity around the condition, thinking that my body was useless and I couldn’t do all the things I wanted to do. Running helps me push back those negative thoughts and know that my body can still do stuff.” Tom, Living with Crohn’s. Building a solid support network. It’s important to remember that it’s okay to ask for help. Talking about things and communicating your needs can help you process what you’re going through. Talking about their worries with a friend or family member is enough for some people, while others may benefit from talking to a mental health professional. What mindfulness can do to help. Mindfulness is based on the idea that we are present in the here and now in a nonjudgemental way. By practicing mindfulness, you can become more aware of your thoughts and how they affect you – ultimately learning how to replace unhelpful reoccurring thoughts with more positive ones. Relaxation, meditation, and stress-management exercises may help you to alleviate discomfort and better cope with symptoms. Mindfulness in particular can help you to reduce your stress levels and emotional reactivity. “I think just being vulnerable and being myself has not only affected my mindset, but it’s allowed me to handle my disease better.” Cameron, Living with Crohn’s. Sidekick’s Crohn’s Disease Program. At Sidekick Health, we create digital programs that aim to improve the lives of people living with chronic conditions. Our Crohn’s Disease program is designed to support you in developing a mindfulness practice that focuses on making positive, long-term behavioral changes for an improved quality of life. How does it work? The Sidekick app includes helpful educational content on key areas, including reducing stress, increasing energy levels, getting better sleep, building an activity plan that works for you, and maintaining a healthy diet. “With Sidekick, those affected not only receive important information about their disease but are also supported in many everyday questions and accompanied in a motivating manner. Sidekick helps people to use their own resources and to actively tackle life with inflammatory bowel disease.” PD Dr. med. Emanuel Burri. Find your Sidekick. Sticking to a treatment plan, committing to self-care, and getting the right support is invaluable when living with a chronic condition like Crohn’s disease. Explore our other content on mindfulness, nutrition, and stress management for more inspiration on how to stay optimistic and take back control of your health today.

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A Guide to the Different Types of Eczema: How to Identify Symptoms and Triggers

By Atopic DermatitisNo Comments

The word eczema is an umbrella term for a group of conditions that cause irritated, inflamed, and often itchy skin. If you’re living with eczema or you’ve heard of the condition before, it might surprise you to know that there are actually a number of different types of eczema. In this article, we’ll discuss the 7 most common types of eczema, different types of eczema rashes, and the symptoms and triggers to look out for so that you can effectively understand and manage the condition. What are 7 common types of eczema? While some are more common than others, around 31.6 million people in the U.S. have at least one form of eczema; that’s roughly 10 percent of all Americans. Different types of eczema have different symptoms that require their own treatment plan, and you can suffer from more than one type of eczema at a time. Here are the 7 different types of eczema. Atopic dermatitis. Contact dermatitis. Discoid eczema (also known as nummular eczema). Dyshidrotic eczema (also known as palmoplantar or vesicular eczema). Neurodermatitis. Seborrheic dermatitis. Stasis dermatitis (also known as varicose eczema). Let’s take a closer look at the different types of eczema as well as their symptoms and triggers. Atopic dermatitis. Atopic dermatitis (AD) is the most common type of eczema, affecting more than 9.6 million children and about 16.5 million adults in the United States. The word “atopic” means that the condition is caused by an allergy and can affect any part of the body. You are more likely to develop atopic dermatitis if one of your parents has had it, and the condition often exists alongside two other allergic conditions: asthma and hay fever. Symptoms. Symptoms vary from person to person, with 86 percent of people with moderate to severe atopic dermatitis experiencing itching every day. Other symptoms can include: Oozing, weeping, or bleeding skin when scratched. Thickening and hardening of the skin – a process called lichenification. Rashes – can be anywhere on the body – that may appear purple, brown, or gray in darker skin tones, and red in lighter skin tones. Triggers. We still don’t know exactly what causes atopic dermatitis. But, we do know that the skin’s barrier is weakened. Common triggers include: Stress – there are many different types and sources of stress and everyone experiences stress differently. You can read more about that here. Household detergents, cleaning chemicals, soaps, or perfumes. Allergies to food, mold, pet dander, dust mites, or tree pollen. Certain fabrics, such as wool and synthetics. Hormonal changes, often before periods or during pregnancy. Sidekick’s Atopic Dermatitis program. At Sidekick Health, we create digital programs that aim to improve the lives of people living with chronic conditions. Our Atopic Dermatitis (AD) program is designed to support you throughout your eczema journey. The program features educational content on eczema and connects you to a health coach so you can access personalized support when you need it. You can read more about what an AD Sidekick can do for you right here. Contact dermatitis. Contact dermatitis happens when the skin becomes inflamed after contact with a particular substance. There are two main types of contact dermatitis: irritant and allergic. Irritant contact dermatitis, which accounts for 80 percent of all contact dermatitis, happens when the skin comes into contact with an irritating substance which, in turn, causes damage to the skin cells. Allergic contact dermatitis is an allergic reaction that shows up as a rash on the skin a day or two after the skin has come into contact with an allergen. Symptoms. Contact dermatitis causes a number of different skin problems, including: Itchy, crusting, or scaly skin. Lesions in affected areas. Hypersensitivity to the sun. Oozing blisters. Triggers. Substances that can trigger irritant contact dermatitis include: Solvents like detergents, soaps, and bleach. Makeup and hair dye. Nickel-containing jewelry, belt buckles, or zippers. Over-washing hands. Scratchy fabrics such as wool. Substances that can trigger allergic contact dermatitis include: Urushiol – found in poison ivy, poison sumac, and poison oak. Nail polish. Fragrances. Nickel. Thimerosal – a preservative found in some topical antibiotics. Discoid eczema. Discoid eczema, also known as nummular eczema, leads to circular, itchy, and sometimes oozing patches of skin. The word “discoid” refers to something that’s flat and circular, like a disc. And, the word “nummular” comes from the Latin word for “coin,” as the affected areas can look round or coin-shaped. Nummular eczema can occur at any age and often affects males in their 50s or 60s. Symptoms. Discoid eczema causes a variety of skin problems, including: Coin-shaped lesions on your arms, legs, torso, or hands. Itching and burning. Lesions that are oozing liquid or have crusted over. Discolored, scaly, and inflamed skin around the lesions. Triggers. The causes of discoid eczema aren’t always clear, but triggers can include: Very dry skin. Insect bites. Scrapes. Chemical burns. Dyshidrotic eczema. Dyshidrotic eczema, also known as palmoplantar, pompholyx, or vesicular eczema, causes small blisters on the palms of the hands, soles of the feet, and edges of the fingers and toes. Some people experience dyshidrotic eczema just once, and others live with it as a chronic condition. It’s thought that the term “dyshidrotic” was first used in the 19th century to describe “disordered sweat”. This suggests that this type of eczema was thought to have been caused by a malfunction of the sweat glands in the hands. Today, the exact cause of dyshidrotic eczema isn’t actually known. It is, however, more common in people with another form of eczema. There could also be a genetic component at play as dyshidrotic eczema tends to run in families. Symptoms. Symptoms of dyshidrotic eczema can vary greatly and can include: Clusters of fluid-filled pimples or small blisters. Itchy, painful, or burning skin. Dry, cracked, or scaly skin around the blisters as they dry out. Thick skin in the areas where blisters once were. Eczema on the palms of hands and soles of feet. Triggers. Triggers vary from person to person and can include: Shampoo or soap. Nickel or cobalt. Stress. Having wet hands for long periods. Excessive sweating, called hyperhidrosis. Intravenous immunoglobulin therapy: a type of treatment for people with antibody deficiencies. Neurodermatitis. Neurodermatitis is most common in adults between 30 and 50 years of age. It often begins following a stressful or difficult emotional period. Psoriasis and anxiety disorders can also increase your risk of getting neurodermatitis. Neurodermatitis affects about 12 percent of the population in the US. It can occur anywhere but is most common on the feet, hands, elbows, shoulders, neck, and scalp. The eyelids can also be affected, as can the genital and anal areas. Symptoms. Symptoms can include: Thick, leathery patches of skin. Pronounced skin lines. Scales and discoloration. Open wounds that bleed and scab. Triggers. Neurodermatitis triggers can include: Stress. Tight clothing. Some fabrics, including wool or synthetics. Insect bites. Nerve injury. Dry skin. Seborrheic dermatitis. Seborrheic dermatitis appears in places on the body where there are a lot of oil-producing – or sebaceous – glands like the upper back, nose, between the eyebrows, and on the scalp. Certain medical conditions can increase your risk of developing seborrheic dermatitis, including psoriasis, HIV, acne, rosacea, Parkinson’s disease, epilepsy, alcoholism, depression, and eating disorders. Around 11 percent of the general population lives with seborrheic dermatitis. Symptoms. Seborrheic dermatitis can cause a variety of symptoms, including: Flaking skin or dandruff. Itchy rash on the affected area. White or yellow scales on top of greasy skin. Rashes – can be anywhere on the body – that may appear purple, brown, or gray in darker skin tones, and red in lighter skin tones. Triggers. Common seborrheic dermatitis triggers include: Stress. Hormonal changes or illness. Harsh detergents, solvents, chemicals, and soaps. Changes in weather or temperature. Some medications, including psoralen, interferon, and lithium. Stasis dermatitis. Stasis dermatitis, also known as venous eczema, happens when there is poor circulation in your lower legs and fluid leaks from weakened veins. Stasis dermatitis most frequently affects people with poor circulation, usually those over 50. The term “stasis” refers to a slowing or complete stop of the normal flow of a bodily fluid, such as blood. It’s estimated that stasis dermatitis may affect up to 20 million people over the age of 50 in the US alone. Stasis dermatitis is associated with increased age, but it can also indicate an underlying medical condition, such as heart or kidney disease. Symptoms. Symptoms of stasis dermatitis include: Heavy or aching legs with ankle swelling. Itching. Scaling. Orange-brown speckles of skin discoloration. Open sores on the lower legs and tops of the feet. Triggers. Triggers include: Lack of physical activity. Long periods of sitting. Long periods of standing. Talk to a healthcare professional. All types of eczema have their own set of symptoms, triggers, and treatment requirements. Everyone’s eczema is unique. That’s why it’s important to consult with a healthcare professional who can help identify which type or types of eczema you may have. Eczema affects people of all ages. It can get better over time for some, but for others, it can be a lifelong condition. Although there is no cure for eczema, identifying triggers and developing an effective treatment plan with your healthcare provider can make managing your symptoms and avoiding flare-ups much easier. If you’d like to discover more about how to live well when living with eczema, then explore our other articles. We’ve got top tips on managing stress and breaking the eczema sleep cycle, as well as inspiring interviews with real people living with eczema and other long-term conditions.

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“Is Digital Health Right for Me?” Why Digital Health Is Simpler Than You Think

By Digital toolsNo Comments

The digital health universe can seem intimidating at times. With mobile health apps, electronic medical records, wearable devices, and telemedicine taking up all the space, where do you fit in? Get ready to learn more about digital health and how it could change your life for the better. What is digital health? Put simply, digital health is a term that covers all the ideas, products, and research resulting from two things meeting: technology and our health. Digital health connects healthcare systems with technology like smart devices and communication media – such as text messages, emails, and video – to help doctors, nurses, and their patients manage health conditions and promote well-being. Over the years, technology has become a bigger and bigger part of the healthcare system, from digital therapeutics and wearable devices, such as Fitbits and smart watches, to remote patient monitoring, telemedicine, and more. How does digital health help? The potential of digital health on the experiences of healthcare professionals and patients is positive and exciting. Healthcare professionals, researchers, and scientists are using technology to find new ways of working and improving health outcomes. Making healthcare more accessible. Digital tools like smartphones, social networks, and apps offer new ways for you to monitor and have access to the information you need to take a more active role in your health. With so much of the world’s population owning a smartphone, access to digital health tools that could help you manage and track your health and wellness-related activities is at an all-time high. Reducing pressure on the healthcare system. In a post-pandemic world, healthcare systems and workers are overloaded, and digital health tools may help reduce this burden. Medical professionals are looking for new ways to treat pain, disease, and addiction and digital health tools can address critical gaps in healthcare. Who is digital health for? Digital health is for everyone! It doesn’t matter if you’re young or old; digital health can support you throughout your health journey. Whatever your situation, digital health can offer you ways to manage and take control of your health. From tracking nutrition, to learning about symptoms and triggers, connecting with coaches, improving sleep hygiene, and making time for mindfulness, digital health tools are designed to be both simple and accessible. Sidekick’s digital health programs. Certain digital health tools can support you to better self-manage your condition and stick with your treatment plan. Sidekick’s digital health programs are designed to help you make decisions that will improve your quality of life. For example, the mindfulness features in Sidekick’s programs – including relaxation, meditation, and stress-management exercises – could help you to reduce your stress levels. Some digital health programs, like the Sidekick programs detailed below, also offer virtual coaching and guidance, connecting you with people who can support you when you need it. Available via your smartphone anytime, anywhere, digital health apps can support you in making positive decisions about your well-being around the clock. Below are some of the programs that live inside the Sidekick mobile app. Here’s a look at how each has been designed to support people living with that specific condition. Atopic Dermatitis. Research shows that sticking to a treatment plan is an important factor in reducing the symptoms of atopic dermatitis (AD), otherwise known as eczema. It also indicates that stress can trigger flare-ups. Sidekick’s AD program helps people living with eczema tackle those things with features like: Medication reminders. Symptom tracking tools. Healthy sleep tips. Tools to break the itch-scratch cycle. Educational content. Access to a lifestyle coach. “I liked the educational videos very much, especially as I wouldn’t have otherwise had the opportunity to exchange ideas with those who are going through the same thing. I really felt understood!” Evelyn Gross, Sidekick program user. Find out more. Rheumatoid Arthritis. Rheumatoid Arthritis (RA) affects the lining of your joints, causing a painful swelling. RA is associated with increased stress levels, sleep deprivation, anxiety, depression, and fatigue. With this in mind, the Sidekick RA program was designed to encourage users to: Track their symptoms and triggers. Learn new ways to manage stress. Build an exercise routine that works for them. Understand their condition. Get support from a professional health coach. “As an RA program coach, I can review patients’ progression and look for variants or improvement opportunities, and then directly coach them towards their goals by giving them feedback and tips based on their individual needs and inputs.” Tuukka, health coach for Sidekick’s RA program. Find out more. Crohn’s Disease. Due to social stigma and the unpredictable nature of the disease, living with Crohn’s disease can strongly impact people’s lives and negatively affect their mental health. Sidekick’s Crohn’s program helps people living with the condition to play a more active role in their healthcare daily by: Building disease-specific knowledge. Sharing stress-reduction techniques. Encouraging mindfulness and self-compassion. Maintaining a healthy diet plan. Educating on sleep hygiene. “It is really easy to use and because it can be tailored to the user, the whole experience is very personal. Because of the regular tips and nudges it becomes much easier for you to pay attention to your lifestyle and to avoid behaviors that can make your condition worse.” Jaana Heikkinen, Sidekick IBD user. Hopefully, this introduction has left you feeling inspired by the digital health universe and keen to be part of it. Hungry for more? Explore our other articles and take a look at our programs to learn more about Sidekicks’ digital health options and what they could do for you.

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Feeling Lost at Doctor’s Appointments? Here’s an A-Z of Healthcare Terms

By Caregivers, Emotional support, FeaturedNo Comments

Do you ever find yourself coming out of an appointment with your doctor feeling confused? If so, you’re not alone. Our A-Z glossary aims to simplify and explain the most commonly used US healthcare and insurance coverage terms to help you make sense of some jargon so you can walk in and out of appointments feeling informed and confident. Please note that this article was written with a US audience in mind. If you’re living outside of the United States, these terms will probably vary. On that note, check out our article on patient advocacy for tips on how to simplify communication between you and your doctor. Reduce stress and improve recall. Many people may experience feelings of uncertainty, stress, and confusion when they attend doctor appointments, making it hard to receive and retain the important information being shared – especially when it’s spoken rather than written down. Specifically, stress can cause attentional narrowing, a state where the brain can focus only on headline statements and struggles to remember secondary or more detailed information. Doctors and nurses are committed to the health and well-being of their patients, but because of the pressure and strain on the healthcare system, they may be unable to spend as much time as they’d like or need with every individual. That’s why it’s essential to prepare for your appointments by getting to know some of the healthcare terms you’re likely to hear. A-Z of Healthcare Terms. Let’s demystify some medical jargon so you can focus on feeling cool, calm, and confident in your next appointment with your doctor. A. Activities Of Daily Living (ADLs). Activities performed as part of a person’s daily routine of self-care, such as eating, bathing, dressing, and toileting. B. Benefits. A benefit is a service your health plan covers. If you’re insured, you may also have mental health benefits, which means your health plan covers part or all of the cost of mental health-related treatments. C. Chronic disease management. A care approach to prevent or minimize the effects of a long-term illness which includes screenings, check-ups, monitoring and coordinating treatment, and patient education. D. Deductible. The amount you pay for medical services before your health insurance company or plan starts to pay. The deductible usually resets at the beginning of the calendar year or when you enroll in a new plan. E. Electronic Health Record (EHR). Your Electronic Health Record (EHR) or Electronic Medical Record (EMR) is a digital report of your medical history. Your doctor or healthcare provider adds to your record every time you have an appointment. It’s always good to keep in mind that you’re legally entitled to get a copy of your medical records from your healthcare provider in the format you request, either paper or electronic. F. Formulary. A drug formulary, also called a drug list, details the prescription drugs your health plan helps pay for. Different plans have different formularies. G. Grievance. A complaint or statement of dissatisfaction with any part of your care. A grievance could be filed over the phone or in writing. H. Health Proxy. A legal document that lets you choose someone you trust to make decisions about your medical care on your behalf if you find you are unable to make them yourself. I. Infusion Drug Care. Infusion drug treatments are often used for chronic conditions like asthma, immune deficiencies, or rheumatoid arthritis. Infusions are liquid drugs that are put directly into your bloodstream through a needle. These drugs are often covered under your health plan’s “medical” benefit, not the “drug” benefit. J. Job-based Health Plan. Coverage that is offered to an employee, and often their family, by an employer. K. Kegel Exercises. As part of some self-care routines, kegel exercises can help people with problems with urine leakage or bowel control to strengthen muscles under the bladder, and large intestine. L. Long-Term Care. Assistance and care plan for people with chronic conditions. The goal of long-term care is to help people live as independently as possible. It is focused on providing the best care that enables an individual to live a meaningful, independent life. M. Medically Necessary. Your health plan may ask for proof that a claim is medically necessary. This means they need your healthcare provider to show that you need their medical services. At times, providing proof of medical necessity may feel like a burden or even offensive, especially when it stands between you and getting medical care. Remember to seek support from friends, loved ones, and trusted medical professionals to help navigate these challenges if you need. N. Network. The group of doctors, hospitals, and other health care providers that insurance companies contract with to provide covered services at discounted rates. You will generally pay more for services received from out-of-network providers. O. Outpatient. A person who receives healthcare services without being admitted to a hospital. Outpatient care could include surgery without an overnight stay or doctor’s appointments. P. Primary Care Physician (PCP). Also known as a Primary Care Provider, this is the doctor you choose to be your primary source for non-emergency medical care. Your PCP often coordinates your medical care, including hospital admissions and specialist referrals. As such, having a PCP who you trust and can communicate with well is an important element of receiving the healthcare you deserve. If your current PCP is not meeting your needs, consider changing to a different doctor covered by your insurance. Your friends, family, and loved ones may have recommendations that can help. Q. Qualifying Life Event (QLE). Something that happened in your life that means you need to change your health plan, like getting married, divorced, or starting or leaving a job. R. Routine Care. Routine care is usually the care you get from your Primary Care Provider (PCP) and the care you get from other doctors they refer you to. Routine care is in response to a non-urgent condition and can include things like regular physical examinations and monitoring an already known condition. S. Secondary Care. Healthcare from specialists. Specialists are providers who are not your Primary Care Provider (PCP), like cardiologists and therapists. T. Therapeutic Alternative. Therapeutic alternatives are drugs that may have chemically different contents to those initially prescribed by your doctor, but may have a similar effect for treating your condition. U. Usual, Customary, and Reasonable (UCR). This is the amount a health plan will pay a healthcare provider for a particular service. UCR is based on how much that service usually costs, which may vary across cities or states. V. Voluntary Benefits. These are additional to your health plan and bought separately. For example, you can get coverage for cancer, accidental injury, or hospital care. W. Waiting Period. This is important if you get your health plan through your job. A waiting period is the time between when you start your job and the date you are covered by your employer’s health plan. X. X-linked disorders. Sex-linked genetic disorders in which the abnormal gene or genes are located on the X chromosome. Almost all affected people are males. Y. You. The most important person when it comes to your health. Healthcare professionals are here to help, but ultimately, no one knows your body better than you do. Z. Zygote. The way we all started out. A fertilized egg cell measuring less than a millimeter in diameter. At Sidekick Health, we’re committed to helping you live better. Our Sidekick programs feature educational content on a number of lifestyle areas as well as tips and tricks to help you create long lasting healthy habits to improve your overall quality of life. Explore our library to find more helpful healthcare articles designed to help you feel your best and take back control of your health.

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Patient Advocacy: What Is It and Why Is It Important?

By Caregivers, Emotional supportNo Comments

What does patient advocacy mean? Who can do it? And why is it important for people living with chronic conditions? This guide to patient advocacy will provide you with a clear definition of what the term means, easy examples to learn from, and our top tips on how to practice self-advocacy too. What is patient advocacy? Patient advocacy is any activity that’s performed by patients themselves or on their behalf to protect or support their needs as they manage their health and interact with the healthcare system. If you’re living with a chronic health condition and aren’t sure how to start practicing patient advocacy for yourself, you could try some of the following examples: Ask a friend or family member to attend appointments with you. Discuss the pros and cons of a suggested treatment plan with your doctor or nurse. Reach out to a government group who could provide you with support during your health journey. Requesting a second opinion from another healthcare professional. You can find more detailed patient advocacy tips below. Principles of patient advocacy. Patient advocacy is about speaking up for yourself and easing your healthcare journey. Before we discuss how individuals and organizations can do this, let’s look at some basic patient advocacy principles. Healthcare professionals are also encouraged to practice patient advocacy. This includes physicians, nurses, and allied health care providers. The following is an introductory list as set out in the American Nurses Code of Ethics: Respecting human dignity. Committing to the patient. Treating all patients equally. Protecting the rights of the patient. Preventing undue suffering. Who can be a patient advocate? Technically, anyone can advocate for a patient. Most commonly, patient advocates are friends, family members, hospital-appointed individuals, nurses, societies or associations, and government groups. It’s also within your power to practice self-advocacy and advocate for yourself – more on that later. Here are some examples of different professional patient advocates and what they offer: If you’re based outside of the US, be sure to explore what patient advocacy services your government or local community offers. Groups offering free support. Non-profit organizations may offer patients free services, often focusing on supporting marginalized or vulnerable groups. For example, all services provided by Patient Advocate Foundation are free to the patient and those working on their behalf. Similarly, the National Organization for Rare Disorders assistance programs help patients with rare diseases obtain life-saving or life-sustaining medication they could not otherwise afford. Associations, societies, and foundations. Often disease- or condition-specific societies like the American Cancer Society offer tailored advice, while The National Patient Safety Foundation creates resources and lobbies for patient safety. Private advocacy groups. For-profit patient advocacy groups or individuals – like Patient Pal or Health Advocate – offer services to patients on an individual basis. Paid for directly by the patient or sometimes by the patient’s employer, they can support a range of issues, from getting diagnosed correctly to health insurance claims. Patient advocates in hospitals. In-hospital patient advocacy is often undertaken by nurses. Nurses can help their patients assert their rights and secure the treatment they need by working with decision-makers, staff, or doctors to propose medical solutions or help solve treatment problems. Government groups. Several US government groups help patients on a large scale. For example, The National Institutes of Health (NIH) conducts medical research, while The Food and Drug Administration (FDA) regulates the foods and medicines we ingest. Patient advocacy examples. If you need extra support on your patient advocacy journey, there are patient advocates who can help you to communicate with healthcare providers, make decisions about your healthcare, and get financial, legal, and social support. They may also work with health insurance companies to support a patient’s case management and financial planning. Here are a couple of patient advocacy examples: Managing medications. Patients facing memory loss, a breakdown of routine, or isolation may lose control of their prescription management. A patient advocate might support by advising on local pharmacy delivery options, stocking up on certain medicines, setting reminders, and asking about other needs. Discussing pros and cons. Some treatment plans include complex medications with varying side effects. A patient advocate might discuss those potential side effects in detail, help form questions for the next doctor’s appointment, and direct patients to further resources and networks. Family support. As well as patients themselves, caregivers and family members can also experience stress and uncertainty. A patient advocate might help by representing or providing support to these people. They may also offer to mediate should a family conflict regarding healthcare arise. Why is patient advocacy important? With rising healthcare costs and an aging population, the healthcare system – and the people working within it – are under more pressure than ever. Despite their best efforts, appointments with doctors and healthcare professionals can sometimes feel stressful and time-pressured. Many people experience uncertainty when they attend doctor appointments, making it hard to retain the information being shared. Studies show that patients often only remember about half of the information they receive at appointments accurately. Health insurance and all its complexities also play a huge role in American healthcare, which can be a further barrier for people trying to figure out the system. According to a United Health survey, only 9 percent of patients understand basic health insurance terms. With all these factors in mind, it’s important that you understand and advocate for your needs to ensure you get the necessary care and support on your road to self-management and recovery. Patient advocacy and chronic conditions. The impact of living with a chronic condition is far-reaching. People need to adapt their daily routines and lifestyles to accommodate their changing needs. Self-management becomes crucial, and the additional mental health strain can take its toll. Symptoms and experiences can also vary significantly from patient to patient. With this in mind, people living with chronic conditions and their loved ones benefit from support in the form of empathy, commitment, and a multi-disciplinary approach. Patient advocacy can provide emotional support or connect you to appropriate mental health resources. Tips for practicing self-advocacy. Having a patient advocate in your corner as much as possible is an excellent way to approach your healthcare journey. But there will still be times when you’ll need to attend an appointment on your own or advocate for yourself. Remember, your opinion is important, and feeling heard and understood is vital to feeling better. Here are our top tips for practicing self-advocacy: Know your stuff. Preparation is your best friend. Before any appointments or interactions, take the time to plan your journey and write down all the questions you’d like to ask. Research your symptoms and possible treatments, and familiarize yourself with some medical terms that might come up in advance so you can feel informed and confident. Did you know?: In the US, The Civil Rights Act of 1964 and Executive Order 13166 mandated that interpreters be available in healthcare institutions that receive federal funding. So, if English is not your first language, you have the right to request that your patient documents are translated and that an interpreter is present at your appointments. Ask questions. Remember, it’s important to speak up. If your doctor proposes something you disagree with, or you don’t understand their reasoning, or feel confused, you have every right to ask for clarification. Some examples of the sorts of questions you might wish to ask in an appointment could include: What treatment is recommended for my diagnosis? What are the benefits and risks? Are there any alternatives to this treatment plan? How and when will I receive my treatment? How long will treatment last? What are the side effects? How can I tell if the treatment is working? Is there anything I can do to aid my recovery? You can even practice some of these questions before your appointment to get used to saying them out loud. There is no such thing as a stupid question, and no topics are off-limits – especially when it comes to your health. Get organized. Knowing your health history and keeping a log of your previous and current medications is invaluable. Also, taking notes before, during, and after appointments will help you speak up for yourself with more confidence. It can be easy to lose track of conversations, so being organized and writing things down can help you stay on top of incoming information and takes the pressure off trying to memorize everything. Advocating for yourself or getting the advocacy support you need, committing to self-care, and feeling confident and in control can prove very helpful when living with a chronic condition. At Sidekick, we recognize the importance of patient advocacy. Our programs were designed to help you take back control of your health so you feel like you’re in the drivers seat of your journey. Learn more about what Sidekick’s can do for you by exploring our programs right here.

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Why You’re More Than Your Rheumatoid Arthritis: A Guide to Self-Love and Care

By Health Conditions, Mindfulness / Selfcare, Rheumatoid ArthritisNo Comments

There’s a lot to consider when you’re living with a condition like rheumatoid arthritis, from medication to improving sleep hygiene, handling stress, and reducing caffeine. We understand that trying to achieve all these objectives and more while maintaining your emotional well-being can feel overwhelming. So how do you incorporate valuable self-care into daily living without risking burnout? We’re here to help. We’ve put together a guide to support your emotional well-being, including top tips on mindfulness, self-care, and avoiding self-management fatigue – all built on science and informed by people with similar experiences. Rheumatoid arthritis and your emotional well-being. First, it’s crucial to consider the emotional impact living with rheumatoid arthritis can have on your mental health and know that you’re not alone. Studies suggest that there is a close link between arthritis and depression, especially for those over 50. There will be good days and bad days, and that’s okay. Having self-compassion and accepting difficult emotions is a key part of good self-care. Identifying the types of emotional responses you might be having and understanding what triggers them will help you manage your physical health in a way that is personal to your needs and lifestyle. Some common emotions that people with arthritis experience are: Stress. A little stress is part of a normal, healthy life, but too much stress can be harmful, particularly for people with chronic conditions. Equally, we know that living with rheumatoid arthritis can cause stress. So, stress is both a trigger and a side-effect, meaning the cycle between the two things can loop on repeat. Specifically, inflammation in rheumatoid arthritis is partly caused by cytokines – chemicals released by stress. So, increased stress leads to increased cytokines and inflammation in your body. Thankfully, with the help of tools like mindfulness, healthy eating, and regular exercise, we can all learn to manage our stress levels and significantly reduce their impact. Frustration. Sometimes, the unpredictability of rheumatoid arthritis gets in the way of planning. What’s more, having to rely on the people around you to get up and dressed in the morning, complete tasks around the house, or just open a jar of pickles can be very frustrating. ‘Most days, my mum had to help me get in and out of the bath as the handrail wasn’t enough, wash and brush my hair, and even help me walk around the house. Now, at the age of 24, sometimes I still have to get her to help me with these things. Luckily, I’ve learned to accept my condition and my limitations now.’ Emily, living with rheumatoid arthritis. Small adjustments like learning to manage your expectations, leaving yourself plenty of time, and using assistive devices will all help to facilitate your independence and make life a little easier. Loneliness. When shaking hands with someone causes considerable pain, or the walk to and from the train station leads to a flare-up, making arrangements and sticking to social engagements can end up being very difficult. Although taking a break from socializing is often necessary and unavoidable for people living with rheumatoid arthritis, it can be isolating and lead to feelings of loneliness. While loneliness is a very real side effect of living with rheumatoid arthritis, there are ways that you can find balance by making the most out of your support network. More on that later. Mindfulness and self-management. Self-management and lifestyle changes are crucial to building and sticking to a treatment plan. But sometimes, squeezing that extra yoga class in – on top of dealing with symptoms like joint pain, fatigue, and a struggling immune system – can feel like a little too much. That’s where self-care and mindfulness come in. Mindfulness is based on the idea that we are present in the here and now in a nonjudgemental way. By developing your skills in mindfulness, you can become better able to self-manage. One of the benefits of regular mindfulness practice is that you can learn how to accept and deal with your pain better. Meditation and other mindful relaxation techniques can help you reconnect with your inner self, objectively observe the impact rheumatoid arthritis has on your daily and long-term experiences, and begin to move away from stress and negative thought patterns. How to build the best rheumatoid arthritis self-care plan. There’s no one-size fits all approach to rheumatoid arthritis treatment. Everyone’s experience is unique, so each person with the condition must identify the path that best suits their individual needs. One thing all people living with rheumatoid arthritis can do is learn the techniques that best support their ongoing self-management plan and emotional well-being. These self-care tips will help you to navigate the highs and lows. Name that feeling. Low moods and negative feelings are a part of life, especially for those living with chronic conditions. Accepting this and, most importantly, acknowledging your emotions is crucial to processing them effectively. Knowing whether you feel angry or sad will impact what action to take – do you need to remove yourself from the situation and focus on your breath? Or reach out to a close friend for a chat? Transitioning into a more positive mindset will help you to alleviate both emotional and physical symptoms more quickly. Make time for self-love. It can be difficult to be kind to yourself if you’re going through a hard time but slipping into self-loathing only worsens things. You’re much more than your condition and have lots to offer, even on difficult days. Take a deep breath and remind yourself of your best qualities – perhaps you are a great cook, a supportive friend, or have a brilliant sense of humor! Making time for self-love could help you reduce stress which, in turn, could reduce physical symptoms like inflammation. Give yourself some credit. One effective way to increase your well-being is to train your mind to pay attention to the good things in your life and how you contributed to them. Reflecting on what you did is vital here – you’ll soon start to notice that your happiness depends more on you and your actions than other external factors. This sense of control can be very empowering. It can help you respond to your triggers in a healthy way and will allow you to take positive steps toward building and maintaining a treatment plan that works for you and your lifestyle. Practice gratitude. Did you know that the more grateful a person is, the more likely they are to enjoy better physical and mental health? Practicing gratitude can help you deal better with adversity and become more self-aware. Robert A. Emmons, Ph.D., a leading scientific expert on gratitude, has found that practicing gratitude can boost your mood, reduce physical symptoms, and improve sleep quality – all of which will help you feel stronger daily. Challenge negative thoughts. How we think influences our physical state, and negative thoughts can be particularly harmful when it comes to sleep hygiene. Emotions such as anxiety or frustration mobilize the stress response, strengthening the wakefulness system and weakening the sleep system. What’s more, most of our negative thoughts aren’t based on hard facts and are often either exaggerated or wrong! When faced with negative thoughts, think objectively about what proof you have for them and focus your effort on what can be changed. Your body will be well-rested and more resilient for it. Be open and communicative. Consider how being open and honest about your experiences might be beneficial. Do the people in your life know how rheumatoid arthritis affects you? Do they feel empowered to support you? Discussing your specific needs with friends and loved ones will change your quality of life for the better – strengthening your support network with empathy and understanding will mean you can more easily work together, leading to more joy and well-being all around. Identifying your triggers, committing to self-care, and getting the right support is invaluable when living with a chronic condition like rheumatoid arthritis. Explore our other content on rheumatoid arthritis and learn how to manage your condition on the go. Also, check out these inspiring stories of real people living with RA.

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Managing Rheumatoid Arthritis at Home and Away: Our Top Tips

By Health Conditions, Rheumatoid Arthritis, SeasonalNo Comments

Finding time to get away from everyday pressures is essential for all of us to recharge our batteries and connect with ourselves. No matter your lifestyle or routine, everyone needs a break now and then. Striking a balance between productivity and rest looks different for everyone. Still, it can be especially tricky when living with a long-term condition like rheumatoid arthritis (RA). Stress, fatigue, a change in diet, and extended periods of sitting still can all impact your condition, both at work and on vacation. But that doesn’t mean you can’t get away and have a fantastic time! You can have the best of both worlds by caring for yourself at work and knowing how to plan your trips. Check out our guide for top tips on managing your rheumatoid arthritis all year round. Finding balance when living with rheumatoid arthritis. In addition to sticking to a treatment plan and remembering to take medications, you can self-manage your rheumatoid arthritis by practicing proven strategies to boost your immune system and reduce pain and inflammation. These strategies include regular exercise, maintaining a healthy diet, improving sleep hygiene, and managing emotional well-being through mindfulness. Keeping on top of your condition while also tackling fatigue can be challenging, especially when your symptoms are affected by factors beyond your control, like atmospheric pressure, temperature, and humidity. So, how can you stay organized and active while also leaving room for self-care and recovery year-round? Let’s first look at best workplace practices that will allow you to embrace wellness at work. Ways to manage rheumatoid arthritis in the workplace. Balancing activity and rest at work is essential. Listen to your body and slow down or stop when you feel pain. But remember, too much inactivity can lead to poor movement patterns and increased discomfort. Find the right balance for you. Inform your colleagues. We recommend informing your manager and colleagues about your condition. Understandably, you may wish to keep your condition to yourself, but sharing it with your colleagues may make it easier to manage stress and ask for support at work. Seek available support. In some circumstances, your employer may even have a responsibility to make accommodations for you. These could include providing you with an adjustable table if you have back pain or allowing you to take breaks to go for a walk or do some stretching. Know your rights. Whether or not you decide to disclose your condition, it’s essential to find out your workplace policy on sick pay and time off for medical appointments. This will give you a better sense of your flexibility in dealing with flares and routine check-ups. Take a practical approach. Try breaking your tasks into smaller chunks if you can. When faced with multiple tasks, try starting with the most demanding before moving on to the easier ones. Always make it a habit to rest before you become too tired; that way, you’ll have more energy to continue. How do the seasons impact rheumatoid arthritis? Before we talk about planning those all-important vacations, it’s time to take a quick look at the influence of seasonal variation on disease activity. It might inform when, where, and how you book your next trip. Some people report that pain and symptoms, like tender joint counts, worsen during cold, rain, and low atmospheric pressure periods. Others say that flares occur when it is humid or hot outside. Unfortunately, studies into the effects of weather on rheumatoid arthritis are sparse, but there is some evidence to consider. A 2019 study of more than 12,000 people with rheumatoid arthritis concluded that symptom flares in the small joints of the hands and feet occurred most often in the spring and winter. In a smaller 2020 study, researchers found that extreme temperatures in the summer and winter significantly impacted symptoms. So, why might this happen? Atmospheric Pressure. An increase or decrease in atmospheric pressure, also known as barometric pressure, can cause the tendons, muscles, and scar tissue to expand and contract, creating pain in joints affected by arthritis. Humidity. High humidity levels can cause sweating and dehydration, increasing blood pressure and decreasing the amount of fluid around the joints, resulting in more joint pain. Temperature. It’s been suggested that low temperatures may increase the thickness of joint fluids, making them stiffer and perhaps more sensitive to pain in cold weather. Remember, everyone’s experience with rheumatoid arthritis is different. It’s important to work towards identifying and understanding your own triggers so that you can confidently manage your condition, no matter where you are and what you’re doing. Top rheumatoid arthritis travel tips. Now that we’ve discussed how to manage your condition at work and know the possible effects of the changing seasons on your rheumatoid arthritis, it’s time to move on to booking that vacation! Traveling with rheumatoid arthritis brings some challenges. But, with thoughtful planning and packing, you can maximize your downtime and enjoy the break you deserve. 1. Consult your doctor. Before going anywhere, speak with your doctor. Be sure that your vaccinations are up to date, and ask about any changes to your medication routine. Steroids could help if you experience a flare, and antibiotics could be handy if you get an infection. You might also ask for a doctor’s note or an extra copy of your prescription. 2. Keep an eye on the climate. You know your own condition best. Consider the climate of where you’re traveling and how it may affect you. Humidity and temperature may aggravate your symptoms. If heat is a concern, check the forecast and travel at the time of year that will suit you. 3. Maximize available support. Airlines, hotels, and rental companies will be happy to help; you just have to tell them what you need. Airlines can offer pre-boarding and motorized escorts through the airport. Some rental car companies offer cars with swivel seats, spinner knobs, and other hand controls, and hotels have accessible ground-floor rooms. 4. Tips for transit. Traveling mid-week or off-peak might help you avoid long lines at the airport. Book an aisle seat, so it’s easy to stretch your legs. Try to keep bags light and easy to carry. Include medications in your carry-on luggage with ice packs to keep them cool. An extra pillow can make your journey more comfortable. 5. Accommodation is key. Your hotel will be your home for a while; make sure it offers everything you need. If you have medications that need to be kept cool, look for a room with a fridge, for example. Consider booking somewhere near an outdoor space or a park so you can get some fresh air, find a quiet spot for mindfulness, or do some light exercise to relax and look after your joints. 6. Focus on your food plan. Changing your routine or traveling to another time zone can disrupt your appetite. Make sure you stick to healthy foods and don’t skip mealtimes. Carry healthy snacks, drink plenty of water, and limit your alcohol and caffeine intake, as they can aggravate inflammation. Choose a destination with food options that suit your dietary requirements.

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Breast Cancer Check-Ups: How to Make the Most Out of Your Appointments

By Breast Cancer, Emotional support, Featured, HCP, Health ConditionsOne Comment

You’re on your way home after your breast cancer check-up appointment, and it’s only now that all those questions you’d been storing up come flooding back to you. During your appointment, however, your mind went blank. Sound familiar? Appointments with your healthcare providers are key touchpoints in your journey to recovery, and getting all the information you need when you meet with your doctor is important. But, we understand that feeling overwhelmed and navigating medical jargon can sometimes make that difficult. We’ve put together a guide to support you during your journey, including how best to prepare for your appointments and what questions to ask. Emotional well-being in between appointments. There’s no right or wrong way to feel after a breast cancer diagnosis. People who have just received a diagnosis can go through many different emotions in one day – from shock and anger to disbelief and numbness. The days and weeks immediately after a diagnosis while you wait for your first appointment can be particularly difficult. Many people start to feel calmer once a treatment plan has been identified. However, it’s still very common to struggle with the following types of emotions in between appointments. Acknowledging these feelings and knowing that you’re not alone in them will help you to navigate your treatment journey. Stress. A cancer diagnosis can feel overwhelming, making it hard to think straight or carry out everyday tasks. Some people also experience physical symptoms such as loss of appetite, diarrhea, or difficulty sleeping, all of which often lead to raised levels of stress and anxiety. Sadness. It’s normal to have times when you feel very low. Breast cancer treatment and recovery is rarely a linear journey. And sometimes, a cancer diagnosis can trigger more serious mental health issues such as depression. Loneliness. Feeling lonely or isolated is very common, and you may feel lonely even when family and friends surround you. If they haven’t experienced cancer themselves, you might feel like they don’t understand what you’re going through. How to make the most of your appointments. We understand that appointments with your cancer care team can sometimes feel pressured. This is your opportunity to speak in person with the healthcare professionals, get some answers to your ongoing questions, and receive those all-important updates. Firstly, know that you can always let your doctor know if you’re having a hard time following along during the visit. Doctors tend to forget that their medical jargon isn’t always clear, and will be more than happy to rephrase their explanations. Remember, you and your well-being are the priority throughout this journey. Here are some other ways to look after yourself and get the most out of your appointments: Preparation. Before an appointment, plan your journey, leave yourself plenty of time and, most importantly, write down all the questions you’d like to ask. We recommend putting your main concerns at the top of your list to make sure they get covered in good time. It’s always worth bringing a pen and a notebook to jot down answers and further questions that come up too. Advocacy. Our number one tip is to bring someone along to assist you. Someone you trust who can help worry about the best route to get there, as well as help take notes so you don’t have to remember every little detail on your own. If they can’t join you in person, you can always ask them to call in with a video or audio call. Ask questions. There’s no such thing as a stupid question! Doctor’s appointments and meetings with your health care team can be tricky. You often get a lot of new information and hear terms that might be difficult to understand. Practical questions for your first meeting might include: What treatment is recommended for my diagnosis? What are the benefits and risks? How and when will I receive my treatment? How long will treatment last? What are the main side effects? How can I tell if the treatment is working? Is there anything I can do to aid my recovery? What clinical trials are available for me? If you’re looking for further advice on questions to ask your doctor, the American Cancer Society has compiled a comprehensive list to guide you from diagnosis through treatment and recovery. Tackling difficult topics. There’s no need to be embarrassed about any part of your breast cancer journey. Breast cancer and its treatment – from screening tests, genetic testing, breast reconstruction surgeries to radiation therapy – can impact many areas of your body and personal life. Understanding the side effects of your treatment and feeling confident enough to talk to your doctor and support network about them will ensure you get the help, care, and information you need when you need it. “The worst is hair loss. You cry for your hair because it has such a strong link to your identity. For people struggling with this, we’re happy to put them in touch with a wigmaker in advance of their therapy. The psychological burden of breast cancer is another strong side effect. Our psycho-oncologist offers help in the form of talks during the therapy. It’s also important that people with cancer communicate with their loved ones. Be open with them, tell them that side effects are normal, and don’t be afraid to ask for help when you need it.” Nurse Ines, Specialist Oncology Nurse. How can you live well when living with breast cancer? It’s still possible to find joy in the everyday, even when you’re living with breast cancer. You can read more about that right here. By engaging in positive tasks and building healthy habits that focus on physical activity, tailored diet, sleep, stress management, and medication adherence, you can make a big difference to your overall quality of life. “When you’re living with a condition like breast cancer, making small changes to your daily routine can have a big impact on your overall quality of life.” Haukur – Physical Therapist, Clinical Researcher, and cancer survivor. Advocating for yourself, committing to self-care, and getting the right support are invaluable when living with a chronic disease. Explore our other articles on breast cancer and find valuable, supportive information on mental health as well as tools for breast cancer caregivers.

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How to Reduce the Effects of Eczema on Body Image, Relationships, and Sex

By Atopic Dermatitis, Emotional support, Featured, Health Conditions, Mindfulness / SelfcareNo Comments

Everyone deserves to feel good about themselves and enjoy healthy relationships with their loved ones. For people living with eczema, this can be uniquely challenging. Eczema can impact so many areas of life. Besides chronic dry, itchy skin, people with eczema often find that the condition can severely affect their emotional well-being. Dealing with these effects can interfere with your self-esteem, maintaining a healthy body image, managing relationships, and enjoying sex. It’s not always easy, but there are things you can do to build confidence, trust, and intimacy. In this article, we’ll discuss some of the more taboo topics that you might not necessarily feel comfortable talking to your doctor about. Eczema and the mind-body connection. It’s easy to underestimate the link between mind and body when it comes to our well-being. Mental health needs are often viewed as being totally separate from physical needs. But anyone dealing with a chronic condition like eczema will know that the two are deeply linked. Dr. Anthony Bewley, Consultant Dermatologist at Barts Health NHS, explains that there is even a brain-skin connection: “Nerves in our bodies have neuropeptides that connect the brain to the skin, so it’s not surprising that if you’re feeling anxious or depressed, it may have an effect on your skin.” Equally, we know that living with eczema can cause stress, anxiety, depression, and low self-esteem. Poor mental well-being is both a trigger and a side-effect of eczema, meaning the cycle between the two things can loop on repeat. So, how might the mind-body connection specifically affect people living with eczema when it comes to body image, relationships, and sex? Body image. More than one-third of people with eczema say they ‘often’ or ‘always’ feel angry or embarrassed by their appearance because of their condition. If eczema has made you dislike how your skin looks or feels, it can be tough to feel good about yourself. Equally, if eczema has chipped away at your self-esteem, you may struggle to appreciate all the other ways your body is doing well – like pumping 5.5 liters of blood per minute or sending information along nerves at about 400kmph. Relationships. One-third of adults with eczema have reported that their condition has interfered with establishing relationships, with up to one-half avoiding social interactions altogether because of their appearance. Sometimes, the fatigue and irritability that comes with a flare-up can make people with eczema feel withdrawn and disconnected from their friends, family, and loved ones. Sex. Most people consider sex and intimacy a fun and integral part of their partnerships. For people with eczema, sex can also be a source of embarrassment, anxiety, and pain – adding an unwanted layer of complexity to physical encounters. A 2017 study found that more than 80 percent of adults with eczema said their condition affected their sexual behavior. Reducing the effects of eczema on body image, relationships, and sex. Having a healthy body image is about more than liking what you see in the mirror; it’s also about confidence and self-esteem. When you prioritize feeling valued and respected, you’re more likely to think and feel positive, have compassion for yourself and recognize the strengths and qualities that make you attractive and unique. What are some tried and tested ways to build confidence, trust, and intimacy with yourself and your partner? Practice self-love. It can be challenging to be kind to yourself if you’re going through a hard time but slipping into self-loathing isolates both you and your partner. You are much more than your skin condition. People that want to be physically intimate with you are attracted to all the different things that make you who you are. Self-care and self-acceptance can help you receive care and acceptance from others. Practicing self-love and sexual stimulation helps you to accept your body and can have a positive impact on your shared sexual experiences and allow for intimacy when your skin is too painful for sex with a partner. “Doing right by myself gives me the extra boost in self-confidence that I need, not only in terms of dating but in every part of my life, from work to friendship to going to the gym.” Adam, living with eczema. Practice mindfulness. Mindfulness practices have been found to positively affect quality of life. Mindfulness is all about being aware of and accepting the present moment. By practicing mindfulness regularly, you’ll be able to identify your eczema triggers and respond to stress in a healthy way. Stress relief can play a significant role in improving your body image and confidence. Meditation and other mindful relaxation techniques can help you reconnect with your inner self, observe the impact eczema has on your self-image, and begin to move away from negative thought patterns. Prioritize sleep. Sleeping to improve your sex life may not make much sense at first, but getting a good night’s rest when sex isn’t on the agenda will help you make the most of the times when it is. Sleep deprivation is one of the most common difficulties eczema can cause. Lack of sleep can have a number of consequences and leave you feeling on edge, less able to cope with stress, and at higher risk of a flare-up. Sleeping well is vital to every cell in your body. It impacts your physical and mental state the following day, regulates the immune system and metabolism, and also reduces the risk of chronic diseases. By paying close attention to the quality of your sleep, you’re more likely to stay on top of your general well-being, leaving more room for spontaneity when the mood strikes you. Track your triggers. Eczema triggers vary from person to person, but the most common include heat, sweat, allergens, emotional stress, and pollution – all of which can set off the itch-scratch cycle. Having the most current information about your eczema and avoiding your triggers will empower you to manage your skin condition more effectively, leaving you with more energy for the people and things that bring you joy. “I didn’t realize how much stress triggered my eczema. When going through stressful situations in my personal life, I was absolutely covered in eczema and couldn’t stop itching. It wasn’t until I made a conscious effort to reduce my stress levels that I saw an improvement.” Molly, living with nummular eczema. Be open and communicative. Consider how being open and honest about your sex life might be beneficial. Does your partner know that eczema affects your sex life? Do they feel empowered to help with eczema concerns during intimacy? Discussing this with them could change things for the better. Keep talking about your concerns, wants, and needs. While you may be worried about what your partner will think when they run their hands over your skin, they might be equally anxious about hurting you. One way to get intimate while alleviating these concerns is to apply emollient cream to each other’s bodies to get to know what you are both comfortable with. Treatment is key. For people with eczema, a crucial part of maintaining a healthy romantic and sex life is seeking the appropriate treatment and establishing a positive healthcare routine. With the right partner, treatment and routines can also become part of your intimate lives together. “We try different bath products to see which ones we like and which don’t trigger an allergic reaction. Taking a bath together does wonders for my skin and my mentality. And it has brought us much closer too.” Abbey, living with nummular eczema. Tracking your symptoms, committing to self-care, and getting the right support delivered with compassion are invaluable when living with a chronic condition. The eczema program from Sidekick is designed to help you reduce stress through daily mindfulness and stress-management techniques. The program also connects you to a health coach and an online community of patients so you can access support whenever you need it. Explore the Atopic Dermatitis program and find your eczema Sidekick today.

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How to Explain Eczema to Others: A Helpful Communication Guide

By Atopic Dermatitis, Emotional support, Health Conditions, Mindfulness / Selfcare2 Comments

Here you are, meeting a colleague for the first time, starting a new relationship, or simply standing in line at the grocery store. Anyone who lives with eczema knows the pressure to explain your skin condition can feel constant and frustrating. There are still a lot of misconceptions about eczema, and everyone’s experience with it is unique. So, although explaining your eczema can feel like climbing a mountain – it is a relatively unavoidable part of living with the condition. It’s not easy, but there are a few things that can help. We’ve put together a guide on how to explain your experience living with eczema to the people in your life, built on science and informed by people with a similar experience. Why we need to explain and educate. We understand that the burden of explaining eczema to the people around you can feel unwanted and heavy. You’ve likely got enough going on as it is. Responding to questions, correcting misconceptions, and relaying the severity of the condition can feel invasive and take up valuable energy – especially if you or a loved one are dealing with an eczema flare-up. “When my loved one developed really severe eczema, his whole body was covered in weeping welts which he would constantly rub and scratch. Sometimes people would avoid us and stand at a distance if we were in a queue. This broke my heart as people were making judgments about him without even asking what was wrong.” Annabel, eczema caregiver. Talking about the realities of eczema can help reduce these kinds of experiences for people living with it. With more understanding comes better treatment plans, improved quality of life, and more support all-around. Persistent misconceptions. How many times have you been asked if your eczema is contagious? Or felt as though your condition is being dismissed or underestimated as trivial or easy to treat? These are just some of the most common misconceptions surrounding eczema. Some misconceptions are so recurrent that even those living with eczema believe them. Researchers from the University of Southampton in the U.K. found that people with eczema tend to incorrectly view it as a short-term condition. This means that they underestimate the need for long-term treatment and seek an instant cure for their eczema instead. You and your eczema are unique. Everybody’s experience with eczema is different, with symptoms ranging from mild to severe. Some people develop symptoms soon after birth and live with them well into adulthood. In contrast, others may begin to experience eczema in adolescence and find that it fades over time. Stressors and triggers – such as cigarette smoke, pollen, food allergies, soaps, asthma, and hay fever – vary from person to person, along with medical advice, treatment plans, and their ongoing effectiveness. Your journey with eczema is entirely unique to you. Support is vital. Eczema can have far-reaching consequences for those living with the condition, severely affecting sleep, relationships, work, and overall wellbeing. Effective communication and support are vital to making life with eczema manageable and enjoyable. Dry, itchy skin can make everyday tasks a challenge. Having an informed network around you will mean that loved ones are better equipped to support you, from bathing the kids to doing the dishes or pitching in with meal prep. “The best thing anyone can do is understand that things take me longer to do and that my mind is willing, but sometimes my body isn’t able.”
Melissa O’Neill, living with eczema. How to tackle the conversation. If you find yourself in that familiar place, explaining your eczema to someone new, here are some tried and tested mechanisms to help you approach the conversation with a little more ease and confidence. Start with the basics. More often than not, people are wondering some of the same things. Clearing up the basics can make for a quick and easy chat. Next time you’re asked a question about your eczema, try something like this; “Eczema is a chronic, long-term condition; it is much more than just itchy skin; the cause is unknown, and there is currently no cure; and no, it is not contagious.” Then, it’s up to you if you want to go into more detail or revisit the conversation later. Humour can help. Eczema is no laughing matter, but humor can reduce stress and ease the situation. Sometimes, if you feel up to it, meeting an unwarranted comment or prying eyes head-on with a lighthearted remark can break the tension and soften the blow.
“It’s always coming back, and it sort of comes back with a vengeance, and it’s just like, ah, it’s like the bad guy in a movie who just doesn’t die.” Dua, living with eczema. Don’t scrimp on the details. If someone you care about has asked about your eczema, it’s likely that they really want to understand how it affects you. Talking about specific areas of skin, scaly patches, and skin infections might seem like a step too far, but opening up about the realities of living with eczema helps others to understand the severity of the condition as well as how best to support their loved ones. Refer to pop culture. Eczema hasn’t featured heavily in Hollywood movies (so far!), but a few influential figures are working to raise awareness on the big screen. Pointing friends and family in the direction of other representations of eczema can take the pressure off you and help further normalize the condition. In the HBO series “The Night Of”, the main character, Jack Stone, suffers from a case of eczema. It affects his feet so severely it overtakes every moment of his life outside of work and becomes a prominent part of his on-screen persona and the series’ overall storyline. Help them to help you. Given that no two cases of eczema are the same, it is well worth sharing what you personally find most challenging, how you avoid triggers or prevent flares, the side effects you struggle with, and which, if any, home remedies you find effective. That way, the people around you can be much more effective and deliberate in their support. You are not alone. Some 31.6 million people in the U.S. have some form of eczema; that’s just over 10 percent of the entire population, so the person you are talking to has likely experienced eczema before or knows someone who has. “I used to feel a little self-conscious having to explain my eczema when someone asked, but then you realize how many people know someone who deals with it.” Isiah, living with eczema. Knowing your boundaries, committing to self-care, and getting the right support is invaluable when living with a chronic condition. Including a health app like Sidekick in your treatment program grants you access to an online community of coaches to find support whenever you need it.

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