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Molly Perkins

a photo of Marta who lives with Crohn's disease

How I Learned to Accept My Crohn’s as a Part of Me: Marta’s Story

By Crohn’s DiseaseNo Comments

When living with a chronic condition, there’s so much power in feeling seen and understood. That’s why, on Living Well, we want to provide people living with chronic conditions with a platform to share their stories and experiences. Their stories are here to show that no matter how tricky things get, you’re not alone. There are people out there going through the same thing you are, dealing with their daily ups and downs. In this interview, we chatted to Marta, who was diagnosed with Crohn’s disease as a child. She shared her diagnosis story with us and told us how she managed to accept her Crohn’s as part of who she is. Keep on reading to discover how Marta lives well while living with Crohn’s. Please note that this article reflects the individual experience of the interviewee. This should not be taken as medical advice. Hi, Marta. Thank you for joining us on Living Well. Could you tell us a bit about when you were diagnosed with Crohn’s disease? What symptoms were you dealing with leading up to your diagnosis? You’re welcome. So, I was diagnosed with Crohn’s disease at the age of ten. My mum knew from the age of seven something was wrong because I would eat and eat, but keep getting slimmer. She took me to the hospital and we were told I had a fast metabolism. When I was diagnosed, she rushed me to the doctors because I was trying to go to the toilet and was just screaming in pain. When my mum took me to the doctors, I was told I had fissures. My mum disagreed with the diagnosis and asked to see a different doctor. The second doctor took one look at my bum and said I had an abscess. It was then that I was diagnosed with Crohn’s disease. The doctor told my mum to take me to the emergency room and I spent the next month or so in hospital. Do you remember how you felt after your Crohn’s diagnosis? All I can remember is that I didn’t fully understand what was going on. I tried to ignore my diagnosis and act like it wasn’t happening because I just wanted to be like everyone else. What does a day in your life look like? How do you manage your condition? I wake up in the morning and take medication in the form of tablets. This medication helps slow down the output of my stomach and must be taken at least 20 minutes before eating. Then, I take a shower and change my colostomy bag, get dressed, and have some breakfast. And then I leave for work. When I arrive home from work, I eat again before I get ready for bed. I chill out for a few hours. I take regular oral medication in the morning and at night, as well as injections. How does living with Crohn’s impact your mental health? Are there any self-care methods you practice to look after your mind? Over the years, I’ve suffered with my mental health. I’ve experienced both depression and anxiety. However, when I feel that it’s getting too much and I’m overwhelmed, I take time out and switch off. For me, that means no messages and no social media. I take time to look after myself and do things like face masks, write in my journal, and meditate. These things make me feel better because they allow me to take time to reset myself and get my head back in the game. Unfortunately, there’s a lot of stigma and misunderstanding surrounding Crohn’s disease. How do you deal with this? I just continue to be very open about it. I feel that it’s important to show people there is no shame in speaking out about Crohn’s disease. Living with a chronic condition is natural and it’s a part of many peoples lives. People need to have a better understanding of what Crohn’s disease is and what it’s like to live with it. The best way to achieve this is by telling our stories. Do you feel as though you’ve managed to reach a place of acceptance when it comes to your Crohn’s? If so, how did you achieve this? Absolutely. I’ve learned to love myself. My Crohn’s is a part of me; it does not define who I am. It’s like an accessory; a little something extra added. I achieved this by taking time to understand my condition and how it can affect me on a daily basis. Being aware of my Crohn’s and its symptoms helps me to deal with it in the best way I can. Everyone living with a chronic condition will face good days and bad days. How do you look after yourself on days when you’re struggling? I speak to my friends and family. I remind myself to go easy on myself. And I pray. Finally, is there anything you’d like to share with our readers about what it’s like to live with a condition like Crohn’s disease? It’s not going to be easy, it’s a rollercoaster. But, there’s a whole community out there and you’re not alone. Reach out and don’t be afraid to ask for help or advice. If you’re living with Crohn’s disease, be sure to explore our other Living Well articles. We’ve got tips on how to look after your mental health when living with Crohn’s as well as an interview with a health coach. Discover more right here.

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a photo of IBD health coach Jonna

Ask a Health Coach: How to Live Well When Living With Crohn’s Disease

By Crohn’s Disease, NutritionNo Comments

While Crohn’s disease is a condition with both physical and mental consequences, it’s totally possible to live well when living with Crohn’s. We spoke to one of Sidekick’s special health coaches, Jonna. As part of Sidekick’s IBD programs, Jonna works directly with people living with Crohn’s disease, providing them with personalized support and advice during their journeys. Sidekick has created two programs for people living with inflammatory bowel diseases; Crohn’s and Ulcerative Colitis. This article specifically focuses on Crohn’s disease. To find out more about Sidekick’s IBD programs, visit this page. Keep on reading to discover Jonna’s insight into how to manage the symptoms of Crohn’s disease and take back control of your health. Hi, Jonna! Thank you so much for joining us on Living Well. Can you tell us a little bit about yourself? Thank you for having me! I studied Health and Medical Psychology, through which I dived deep into the world of chronic conditions, including Crohn’s disease, especially from a psychological perspective. During my studies, I realized that there is a huge need for people living with IBD to be supported holistically. This is because the impact that the condition has on a person’s life goes far beyond the physical symptoms. I am so grateful to have been able to do exactly this as a coach in Sidekick’s IBD programs. In your experience working as a coach in Sidekick’s Crohn’s program, what are some of the most common symptoms people living with the condition struggle with? People living with Crohn’s often struggle with difficult physical symptoms, such as diarrhea, abdominal cramps and pain, bloody stools, urgent and frequent bowel movements, reduced appetite, weight loss, and mouth sores. Some other symptoms that I hear about very commonly and what I’ve noticed based on the users’ activity in the Sidekick app, are lack of energy, fatigue, high stress, and sleeping problems. You can probably imagine how intertwined these symptoms can be. For example, having abdominal pain and other troublesome physical symptoms most likely increases your stress levels. You may have to take sick leave from work or you have to cancel meetings with friends and fear they don’t understand why. This, in turn, might make you feel even more worn out and tired, both emotionally and physically. What’s more, because of this high stress and pain, you might still experience trouble falling asleep. In fact, when asking IBD patients about the role their condition plays in their life, they often say that the condition “affects everything” in their lives. Can you tell us about some of the mental health side effects of the condition? Firstly, being diagnosed with a chronic condition means that you have to cope with the frustrating fact that the condition isn’t going anywhere. Crohn’s disease especially can be quite unpredictable in nature, which can make people feel that they have no control over their own body or health. It may be hard to find motivation to keep following your treatment plan day after day, and to remain hopeful about the future. People may also feel exhausted trying to find the right diet and medication that works for them. It is also common that IBD patients feel embarrassed about their condition or symptoms. It may be difficult to communicate to other people without going into ‘too much’ detail. There are a lot of taboos around people’s toilet behaviors that may not be considered appropriate to talk about in certain social situations. People living with IBD may also feel that other people don’t understand what it is like to live with the condition. In fact, they might start avoiding social situations due to pain, fatigue, and concerns about not making it to the bathroom in time or needing to use the bathroom multiple times. The condition might affect your body-image, too. You may be, for example, losing weight due to your disease or experience swelling due to steroids. It may be very hard to see your body change in unwanted ways. Sometimes, other people may make the situation worse with inconsiderate comments. Another, much talked about mental health side effect is stress. Although stress doesn’t specifically cause Crohn’s disease, it can trigger flare-ups and relapse in Crohn’s disease. Understandably, worsening IBD symptoms often lead to even more stress, easily making it a vicious cycle. This is why stress management is so important in minimizing the effect Crohn’s has on the individual’s life. It has also been found that people with IBD are at an increased risk of developing anxiety and depression. Some research has found that anxiety and depression might be even two to three times more likely to occur in IBD patients, compared with the general population. If you notice these feelings of anxiety, depression or overwhelming stress, know that these feelings are common and you are not alone. Do not ignore them, and seek help from a mental health professional. Your mental health is just as important to take care of as your physical health. Finding a nutrition plan that works for you is a big part of managing Crohn’s disease. Can you explain why this is so important? A nutrition plan that works for you helps you prevent weight loss and malnutrition, and helps maintain and improve general fitness. During a flare-up, it’s important to avoid foods that may cause worsening of the symptoms. 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. I want to emphasize that these reactions to food are individual, and the diet of the active phase of the condition should be planned together with a dietitian or other health care professional. What tips can you offer people living with Crohn’s disease to ensure their diet is versatile and nutritious, particularly during a flare-up? I think the emphasis here is indeed on eating as varied as possible. That is, sometimes people with Crohn’s have to follow a very strict diet during a flare-up, but even then it is good for recovery to eat regularly, eat in a variety of ways – within the limits of your diet – and to take care of adequate hydration. During a flare-up, you should eliminate high-fiber and hard-to-digest foods. Easily digestible and liquid food such as soups can be preferred. Suitable drinks are rather dilute drinks containing salts and sugars whereas caffeinated, carbonated, and alcoholic drinks should be avoided. In remission, it is good to try your excluded foods again, so that your diet remains as varied and nutritious as possible. A diet low in fermentable carbs, called the FODMAP diet, is often recommended to manage irritable bowel syndrome (IBS). It can be helpful for stomach problems in the remission phase of IBD patients. Again, consultation with your doctor and dietitian about dietary changes is important. They can help you find out what works the best for you. What are some ways that people living with Crohn’s disease can deal with the unpredictable nature of the condition? Living with Crohn’s disease can diminish the feeling of control that you have over your own body. To deal with the unpredictable nature of the condition, I think it’s important to identify and practice control in the areas of your life that you can control, and on the other hand, accept the areas of life that are out of your control. You may, for example, not be able to control the timing and severity of a flare-up, but you can take control of how to deal with it. For example, you can actively practice stress management techniques, you can learn to plan and prepare nourishing meals, you can make sure to follow your treatment plan, and, importantly, you can ask for help when you need it. Another thing that I would recommend to anyone is finding other people that live with the same condition. This will allow you to share your experiences and worries, as well as receive the kind of understanding and support that only people that have experienced similar things can give you. Merely realizing that you are not the only one struggling with these problems can be very comforting. And finally, what behavioral changes can people living with Crohn’s practice to improve their overall quality of life? Good eating habits and overall healthy lifestyle promote the quality of life of people with Crohn’s disease. Eating habits are not so much about what you eat, but how you eat. When living with Crohn’s disease, it is important to eat calmly and to chew carefully, for example. By chewing well, you can prevent digestive problems and help in nutrient absorption. In addition, eat small portions regularly, for example five times a day. Give your gut enough time to rest in-between meals by avoiding snacking. Take care of adequate hydration by drinking 1-1.5 liters of water during the day. Practicing “mindful eating” can help you be aware of the food and drink you put into your body. It involves observing how the food makes you feel, what emotions and thoughts arise, and the signals your body sends about taste, satisfaction, and fullness. Regarding lifestyle factors, quitting smoking is one of the most important things that people with Crohn’s disease can do for their health and quality of life. Smoking can make the condition worse. People with Crohn’s disease who smoke may find that they have more severe symptoms and complications, increasing the need for steroids, immunosuppressants and re-operations. Other lifestyle factors that contribute to improved quality of life are regular exercise, stress management, and taking care of adequate sleep and rest. Exercise not only helps your digestive tract work more efficiently, but it can also help reduce stress due to the release of endorphins, the “feel-good hormones”. There are so many ways to move your body, so choose exercise you actually enjoy! You may want to ask a friend or family member to join, so this way you also take care of your social needs. There are, of course, many other ways to manage stress. For some people, spending time with loved-ones and talking about their worries works best. You may want to try mindfulness exercises, meditation, yoga, or journalling. Or, it could just be reading a book, listening to music, or whatever you enjoy doing and find relaxing. Do what works for you. When it comes to rest and sleeping, consistency is key. Indeed, you’ll sleep better if you stick to a routine. Set a time for getting up and going to bed on weekdays and on weekends. Be also sure to give yourself enough time to wind down before bed. Make sure to check the temperature and lighting of your bedroom, only consume caffeinated drinks early during the day, and avoid napping. If you’re living with Crohn’s disease or are caring for someone who is, be sure to explore our other articles on Crohn’s. We’ve got real stories from real people living with the condition as well as tips on how to reduce Crohn’s related stress. Discover more right here.

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a photo of nurse Audur

A Nurse Explains Why Patient Advocacy Is So Important

By Caregivers, Emotional support, FeaturedNo Comments

For people living with chronic health conditions, the healthcare system can often feel overwhelming, stressful, and confusing. That’s why patient advocacy is so important. We chatted with our wonderful Sidekicker, Audur, who is a registered nurse with experience in oncology nursing and end-of-life care. Audur is passionate about patient advocacy and making sure that everyone has access to the treatment they deserve. Keep on reading to gain a nurse’s insight into why patient advocacy is such a vital part of healthcare, as well as tips on how you can be the very best advocate for both you and your loved ones. Thank you for joining us, Audur. Can you tell us about your experience working as a nurse? I graduated from the University of Iceland as a registered nurse in 2016. By then, I’d already been working as a nurse assistant in acute internal medicine at the University Hospital of Iceland. After my graduation I started working at the Oncology inpatient ward at the same hospital and became passionate about oncology nursing, family nursing, hospice, and end-of-life care. In my view, Oncology nursing is fascinating because cancer can affect the whole body, which means that you need to look at the patient holistically rather than narrowing the focus on one specific organ or organ system. Cancer therapy is also extremely difficult for both the patient and their loved ones. People become very sick during therapy, and families need a lot of support to be able to care for and support their loved one. In oncology, it is not only the patient who requires care, but their whole family and support system. This is also the case with hospice and end-of-life care. There’s something about being there for the patient and their family during the final days. It’s a delicate time and somewhat sacred, and I feel very humbled to be trusted to guide families through that journey. And the gratitude that you can feel from the family when you have done your job well, is a feeling like no other. Even though oncology and end-of-life nursing is often filled with sorrow and unfairness, this feeling of gratitude has always given me a sense of purpose and fulfillment. For someone who has never heard the term ‘patient advocacy’, how would you explain it? In its most simple terms, patient advocacy is about giving a voice to patients and their caregivers and making sure that they are safe, represented, and supported through their whole healthcare journey. It’s about making sure that they get the best care and treatment possible with their best interests at heart and that the patient’s voice is always heard. Why is patient advocacy so important in healthcare? Patient advocacy is a very important part of working in healthcare and, as the name suggests, it’s the role of advocating for patients when they either can’t or don’t know how to advocate for themselves. This role is important to ensure patient’s rights are protected, but it’s also important for less obvious reasons. Patients need to know that someone who knows the system is in their corner, and what their choices are when it comes to their healthcare. Healthcare-related information can be very complex and making decisions that can affect your health and wellbeing is difficult when you either don’t know or understand what’s happening with your health or how the choices and different treatment might affect you. Having someone who understands your condition, is familiar with your medical history and situation, and knows the healthcare system inside-out can make all the difference. Not only for your physical, but also mental health. Because being a “patient” is hard work and can be very stressful. What is the nurse’s role in patient advocacy? Patient advocacy, in my view, is about being the person who coordinates the information and the roles of the different health care professionals. The patients should always be at the center of things, but there are so many people who touch the patient journey: doctors, different specialties, nutritionists, physiotherapists, psychologists. The list goes on. But, the patients should always be in the center, and I believe it is a nurse’s role to make sure that the patient stays in the center and be the person there standing next to them. I like to think of it as “being their buddy in the system” – knowing their needs and speaking up for them when they cannot do it themselves. Either because they are not physically able to or because they are not able to understand the information that they are being given about their condition and care. I think that nurses are in an excellent position to be that coordinator and advocate for their patients. It’s also about being on the patient’s team and making sure that they and their family understand what is going on, are able to absorb all the information that they are given, and understand it. It’s also about making sure that their needs are met, and that if they’re not met, that you are their advocate or voice in the system that makes sure that they are heard, seen,and provided with the best possible care. I think that a very important part of patient advocacy is to make sure that information is presented in the way that the patient can understand it. So they are also able to advocate for themselves. I don’t know how many times patients and family members have looked at me with a big question mark in their eyes after the morning rounds. It’s so important to make time to sit down with them and explain everything again and ask questions back to make sure that they understand. Can you share any examples of patient advocacy you experienced during your time as a nurse? I once had a patient who was struggling with substance abuse and had been using opiates for a long time. The patient came to the hospital very sick and in a lot of pain. The patient was only put on some mild over-the-counter pain medication. Because this person had a substance abuse disorder the doctor was very hesitant to prescribe anything stronger. However, the truth is that people who have been using strong pain medications for a long time need to have even stronger, or more pain medication than a person who has never taken strong painkillers. In this situation, the patient did not have a voice and his needs were being ignored due to stigmatization within the health care system. By advocating for that patient I was able to get him the medication that he needed. I think that being a patient advocate is especially important for the vulnerable patient populations, like people struggling with substance abuse. They are so often overlooked by most healthcare systems and are even more in need of a strong advocate who sees them holistically as a person whose addiction is a response to a trauma or even multiple traumas. For someone who wants to start practicing patient advocacy, what advice would you give? Listen to the patient and their needs, try to put yourself in their shoes. I think it’s very easy as a healthcare professional to become immune to what the patient and their family is experiencing, because the more experience you have as a healthcare professional, the more you forget how novel and strange this situation is to a normal person. It is a unique experience in their lives, often something that they have never experienced before. For example, if you have a patient being admitted with pneumonia, for you as a healthcare professional this is just another patient that has pneumonia, you might even have more than one patient at a time with the same diagnosis. However, for this individual patient, this is a unique experience. They may never have had pneumonia before, never been prescribed antibiotics, or maybe even never been admitted to a hospital before. Being mindful of that and supporting the patient throughout this unique journey in their lives is a great first step of being a patient advocate. How can caregivers practice patient advocacy and provide support to their loved one? Being involved in your loved one’s journey through the healthcare system is important, both for the caregiver and the patient. I think the number one piece of advice I would give someone is to ask questions. And ask again if you don’t understand the answer that you get. I think people are often afraid to ask questions or admit that they don’t understand the information that they are being given, thinking that they’re stupid for not understanding. But that’s not true at all. Healthcare related information can be so complex, and healthcare professionals often become immune to the complexity of it. Another good piece of advice for caregivers providing support to a loved one living with a chronic illness or going through an acute illness episode, is to write things down and keep all information regarding their healthcare in a single place, in a notebook for example. You could also use that same notebook to prepare for doctors appointments – writing down the questions that you have and what it is that you want to discuss with the doctor. It will help you remember what has happened so you can keep track of things. But, with that being said, it can be hard to be both a caregiver and advocate for your loved one. This is why I think the role of nurses as patient advocates is so important, especially when a patient is admitted to the hospital during some acute episode in their illness for example. Working as a nurse in oncology, I have often felt a sense of relief from caregivers when their loved one has been admitted and they can take off the advocate hat and just be there for them as their loved one, and pass the role of caregiver onto someone else. If you’d like to learn more about patient advocacy, check out this article right here. And feel free to explore all our other stories on Living Well. Happy reading!

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a photo of Leanna who has lived with eczema her entire life

My Eczema Story: How I Found Peace With My Condition

By Atopic DermatitisNo Comments

Leanna has lived with eczema her entire life. While the impact of her condition is far reaching, she has reached a place of acceptance with her skin. Leanna shared her story on how she found peace with her eczema as well as what she’s learned from living with a chronic condition. Thank you so much for sharing your story with us, Leanna. Can you tell us a bit about your experience with eczema? How does it affect your day-to-day life? I have lived with eczema for almost my entire life, so I’m all too familiar with this condition. When I was just one year old, I started developing red itchy patches all over my body, which made me a very irritable and grumpy baby. As I grew older, I was able to manage my eczema for the most part by using steroid creams sparingly whenever I encountered a flare-up. However, my eczema came back in full force at the beginning of my first year at university. Shortly after moving into student residence, I started getting red and itchy rashes that spread across my face and body, which would then become scaly and dry on a constant basis. I thought it was caused by environmental changes and school-related stress. Unfortunately, my eczema persisted throughout that year, even after I moved back home. Over time, I sought medical help from a handful of doctors but was unsuccessful in finding an effective treatment. Since then, I’ve experienced a roller coaster of eczema flare-ups, ranging from feeling slightly irritating to extremely unbearable. I’m currently healing from a four-month-long flare-up and hope to help others with their eczema-healing journey by sharing my story. Eczema triggers and symptoms vary greatly from person to person. How did you learn how to identify your own eczema triggers and symptoms? I learned to identify my specific triggers after experiencing a lot of unpleasant flare-ups over the course of my life. In order to investigate the root cause of my condition, I tried to pinpoint the commonalities between each of the times my skin worsened. I noticed that a flare-up would typically occur after a significant life change that brought on additional stress. This included moving to a new area, going to a different school, working a demanding job, and being in an unstable relationship. As a highly-sensitive person, I often find it more challenging to manage stress, which is a detriment to my physical and emotional health. Other triggers I identified were alcohol and coffee, which I collectively consumed more frequently during the same time my first major flare-up occurred as a young adult. I started to notice that my skin would feel hot and itchy after a night of drinking, which would then lead to persistent rashes. Coffee on the other hand would mainly trigger flare-ups when my stress levels were already unstable. I’ve come to realize that it is often an accumulation of factors that trigger my eczema, rather than a single cause. How do you explain your eczema to the people in your life who maybe don’t know so much about the condition? I try to explain to people that eczema is a chronic condition with no magical cure, as far as we know. It often affects people emotionally just as much as it affects them physically, if not more. Eczema is a diverse condition that affects each individual differently. One person may only get eczema on their hands, while another may get it all over their body. One person may only get a flare-up a couple of times a year, while another may get it on a weekly basis. Everyone has unique triggers and ways to manage them, so there is no one-size-fits-all solution. Eczema is a disease that goes beyond the surface of the skin. Another term for eczema is atopic dermatitis, meaning that it is associated with a dysfunction of the immune system. Therefore, it needs to be treated as such, rather than with band-aid solutions that only target the surface of the skin. How does your eczema affect your mental health? Eczema significantly affects my mental health in many ways. The physical pain of having itchy and inflamed skin leads to the emotional pain of feeling helpless and distressed. Nearly every day, I’m haunted by the feeling that this condition will control my life forever. Even on days when my skin is doing well, I anxiously anticipate when my next flare-up will occur. I’m chronically stressed about my skin, which only exacerbates my eczema. It is a vicious cycle that I’m determined to break. Has your eczema triggered any issues with your body image? How did you overcome them? Yes, extremely. When I look in the mirror and see my body covered in red scaly rashes and peeling skin, I can’t help but feel insecure about myself. I think to myself, nobody wants to see that. I look damaged and unhealthy; I look undesirable. However, I realize how cruel it is to talk to myself like that. The appearance of my skin does not determine a single ounce of my worth. I know I am a beautiful person, with or without my skin issues. If anything, my eczema has made me a more resilient, grateful, and compassionate person. I remind myself of how much I have overcome so far, and that is what keeps me going. Did you manage to reach a place of acceptance when it comes to your eczema? If so, how? I have recently been practicing more acceptance of my eczema after years of constantly fighting and resisting it. I have now come to terms with the fact that this is a condition that will most likely stay with me for the rest of my life. I realized that it only caused me more harm and suffering to expend all of my energy on finding a cure for my eczema. I have tried almost everything including elimination diets, cleanses, topical treatments, UV therapy, herbal medicine, you name it. It only led to more frustration and defeat when none of these treatments got rid of my skin issues. Trust me, I will never stop trying to heal my eczema. However, instead of rejecting and resenting this condition, I have focused on embracing this part of me by taking care of my overall health and well-being. I believe that your perception greatly determines your experience; mind over matter. Have you learned anything from your experience with eczema? Yes, I have learned a great deal from living with eczema for nearly my entire life. I have learned that life is not easy. Everyone is presented with a unique set of challenges that they will have to face at some point. For me, one of those challenges is eczema. In my experience, challenges create change, and I believe that my eczema has led to more positive changes in my life. I now prioritize my physical and mental health more than I ever would have if I did not have this condition. I have also learned that you can always find beauty in pain. I see my rashes as markers of strength; my battle scars. I am proud of how much I have overcome by living with this condition. Most importantly, I’ve learned that I am loved. During the most painful times of my eczema, my loved ones were always there to help me through it. I have received unconditional support from my family, friends, and partner, which is something I will be forever grateful for. The Atopic Dermatitis program from Sidekick Health is designed to provide you with the right support throughout your eczema journey. The program features a host of educational resources on eczema and connects you to a health coach so you can access support whenever you need it. Explore the Atopic Dermatitis program and find your eczema Sidekick today.

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a young boy filling up a glass of water

Do Good by Doing Well: Sidekick Health & charity: water

By Digital tools, Living Well, NutritionNo Comments

At Sidekick Health, we recognize and promote the importance of wellness. Living well and making positive health choices can have a huge impact on our overall quality of life. But, what about the lives of others? At Sidekick, we’re working to make wellness part of everyone’s everyday, and to give everyone the chance to help make this a reality. That’s why we partner with charity: water. How does it work? For every mission you complete in the Sidekick app, you earn water drops. The more drops you collect, the more water you donate. What is charity: water? charity: water is a non-profit organization that funds projects around the world to provide people with clean, safe drinking water. Currently, 771 million people around the world live without access to clean and safe water. Often, the only water that people do have access to carries harmful diseases that can cause serious illness. Access to clean water means education, income, and health – especially for women and kids. With this in mind, Sidekick is proud to sponsor a charity: water project in Cambodia, providing BioSand filters which are expected to bring clean water to hundreds of people. Keep on reading to learn more about Sidekick’s first project with charity: water. The project. charity: water works hard to provide people with access to water all around the world. The project that Sidekick has sponsored is located in Cambodia. Why Cambodia? Over 75% of Cambodia’s population lives in rural areas. In these areas, 27% of the population lack basic access to water and 52% lacks basic access to sanitation facilities. Many people use open surface ponds and rivers that are polluted by human waste and microbial contamination as their water source. What’s more, wells that do exist are often in poor condition. Once a pump breaks, it’s common for communities to draw water with buckets, leading to more contamination. To address the issue of access to clean water in Cambodia, Sidekick is currently funding a clean water project which will take around two years to complete. The project is a BioSand filter. BioSand Filters kill 99% of bacteria in dirty water. It’s a simple solution that cleans water quickly using a biological process. Household BioSand Filters remove pathogens by filtering water through a biological film, coarse sand, fine sand, and gravel. A spout is installed to access the filtered water. This project is a long term solution to improve water quality for communities, and is a sustainable alternative to bottled water. How does it work? charity: water is a non-profit organization. They promise that 100% of public donations go directly to clean water projects. Because of this unique fundraising model, every single cent that Sidekick donates to charity: water goes directly to funding clean water projects. The goal of the project sponsered by Sidekick is to help families in Cambodia filter their water so that it’s clean and safe. It all starts with a donation. Once a donation is sent to the field, charity: water’s local partners begin the planning phase. They obtain construction permits, purchase supplies, and collaborate with community members. Around the 6 month mark constructions begins. In addition to the construction process, local partners spend months establishing community buy-in, promoting safe hygiene practices, and building water committee capacity to manage projects. Once construction is complete, charity: water’s partners collect data and thoroughly review the local project. To ensure that water continues to flow for years to come, charity: water empowers local leaders, use strong operations and maintenance structures, collect data, and implement innovative sensor technology. All of the data on the project’s progress will be sent to Sidekick in a progress report. Do good by doing well. At Sidekick, we’re so inspired by the work that charity: water does. That’s why we developed features in our programs so that you can get involved too. For everything you do in the Sidekick app, you’ll earn water drops. The more drops you collect, the more water you’ll donate. Because we want you to do well while you’re doing good, your Sidekick will encourage you to complete health missions, get moving, and track your water intake. When you log how much you drink each day, you’ll be rewarded with drops, which Sidekick will then donate to charity: water, to provide even more clean water to those that need it most. Equal access to water for all. Clean water is a human right. Our bodies need it to function and perform and even mild dehydration can affect you mentally and physically. At Sidekick, we know how important hydration is for overall health and wellbeing. That’s why we designed our programs to encourage and remind you to drink more water. But, we know that for many people, staying hydrated by drinking clean, safe water is not an option. Not only does a lack of access to water impact physical health, it’s also a burden on mental health. For people living in communities without access to clean water, the stress and worry they experience on a daily basis about the harmful effects of the dirty water they are exposed to adds further to the problem. charity: water and Sidekick both recognize that access to water is a right. Not a privilege. When a community gets access to clean water they no longer have to worry about the water they’re drinking potentially making them sick. They also don’t have to spend time and money going to a health facility because of water-borne diseases. Clean water gives communities more time to grow food, earn an income, and go to school – all of which fight poverty. Thanks to charity: water, Sidekick has been able to make sure that when you collect water drops in the Sidekick app, you’re doing good by doing well. Find your Sidekick today to become more engaged with your own health journey and complete missions that improve the lives of others. You can also read more about the wonderful work of charity: water right here. We’re honored to be working together to provide clean, safe water to those who need it most.

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a photo of Ruth who lives with rheumatoid arthritis

How I Live Well With Rheumatoid Arthritis: Ruth’s Story

By Emotional support, Living Well, Mindfulness / Selfcare, Rheumatoid ArthritisNo Comments

Although its symptoms are far-reaching, it is possible to live well when living with rheumatoid arthritis (RA). We chatted with Ruth, who was diagnosed with rheumatoid arthritis when she was a teenager. She talked us through her reaction to her diagnosis, the impact her condition has on her mental health, and how she’s learned to live well with RA. Ruth’s story is a reminder that your condition does not define you. Could you share your diagnosis story with us? When were you diagnosed with rheumatoid arthritis? I was a healthy, sporty, fun-loving fifteen-year-old when I started experiencing swollen thumbs, knees, and feet. Some days the pain was excruciating and I could hardly move. The next day I was feeling near normal again. It was the most confusing time for me and my parents. A few months later I was diagnosed with rheumatoid arthritis at the age of sixteen. Within a few weeks it had affected every joint in my body and, at a time I was fostering my confidence and independence as a young woman, I became as reliant on my parents as I was on the day I was born. I was unable to move, wash, feed, or use the toilet myself without their help. I was given anti-inflammatories and the doctors were very positive that they could dampen the disease down quickly. Unfortunately, this wasn’t the case and I began an endless cycle of trying different drugs, each one bringing the promise of relief but ending in disappointment. I spent days, weeks, and months in bed, relying on steroids to improve my quality of life. I would be admitted to hospital for weeks at a time for bed rest, steroid drips, and hydrotherapy. Can you remember how you felt after your diagnosis? What feelings were you dealing with at the time? Initially, my parents and I were relieved to finally get a diagnosis and find out what was happening to me. To be honest, we had never heard of rheumatoid arthritis. We just thought arthritis was something that people got later on in life. The doctors were very positive and reassured us that it would be controlled quickly and I would be able to go back to my normal activities. As time went on and we realized it was going to be a longer journey, reality set in. Because I was sixteen years old and still in school, my education was greatly disrupted. This also meant that seeing my friends was a lot harder. I felt very left out as I couldn’t join in with the normal things they were doing. Instead of worrying about boys, hairstyles, and who was dating who, I was going to bed worried that I may not even be able to sit up on my own in the morning. My whole world became suffocated by pain and I felt like I was losing my identity. It was all-consuming and very isolating. I was either in the hospital, going to the doctor for blood tests, or anxiously awaiting my next hospital appointment. How did you manage to process your diagnosis? Was there anything in particular that helped you through the early stages? I processed my diagnosis with the help of my parents, family, friends, and doctors. Talking about how I’m feeling has always been very important to me and I’m very fortunate to have such supportive parents. When I was diagnosed 30 years ago, there was no way to Google RA. My parents got hold of every book they could in order to learn about my condition. We picked up leaflets from the hospital and, at the time, there was a support network called Young Arthritis Care that my Mum spoke to for advice. What are some of the most common triggers that cause your RA to flare up? I find the most common triggers that cause a flare are increased movement and activity, illness, stress, and hormonal changes. My body always lets me know when I’ve done too much. It’s hard to find the balance between staying active and not overdoing it. It’s taken me years to get it right and I still find it difficult sometimes! When you’re having a good day, it’s so tempting to do the things you aren’t able to do on a bad day. It takes a lot of control to stop and rest! I can also experience a flare up if I’m stressed or dealing with another illness. My RA also becomes worse before I started my period. How does rheumatoid arthritis affect your daily life? My life has been greatly affected by RA. Over the years I‘ve had over fifty surgeries to replace and fuse worn-out joints. This consumed my life for years and was incredibly difficult to deal with. For the last 11 years, my RA has been in remission but because of the damage to my joints, my mobility has been greatly impaired. I’m able to walk short distances but I use a wheelchair for longer journeys. I’m not able to drive or leave the house independently. Pain and fatigue have the biggest impact on my day-to-day life. I need to pace myself and take frequent rest breaks in order to keep my pain to a minimum. I’ve recently become more active and have increased my walking. This has helped me immensely. Can you tell us about the impact your rheumatoid arthritis has on your mental health? My mental health has suffered a lot over 30 years. I’ve battled with depression on and off since I was about seventeen. I’ve found that when I’ve been going through an operation or a bad flare, I seem so focused on getting better that my mental health isn’t too bad. However, it’s after the trauma or when the pain decreases that I find things come crashing down on top of me. There have been times when life has become unbearable. It was such a dark time that I’m so grateful to have recovered from. I’ve had two episodes where I totally shut down mentally. But thankfully, I recovered with the help of therapy and my family and friends. I’ve been seeing a great therapist for the past year. With her, I’ve finally been able to deal with some of the issues that I feel have held me back for years. I’ve been able to grieve for the life I could have had and mourn the loss of my independence. I have found a place of acceptance that I haven’t fully felt before. I’m sure I will face hard times again in the future but hope that the strength I have gained in acceptance will make these easier to cope with. Are there any methods you practice regularly to improve your overall well-being while living with rheumatoid arthritis? I find staying as active as possible is really important for my overall well-being. I try to do as many steps as I can in short bursts throughout the day, resting in between. I sing in a choir which uplifts me and I love the social aspect of attending. I try to remain as positive as possible and focus on what I can do rather than the things I’m unable to do. I love going to the theatre, cinema, and shopping with my husband, my mum, and my friends. I think any distraction from the pain is helpful, whether it’s watching TV, catching up with friends, or writing poetry. The support I’ve found on Instagram has been wonderful too. Talking to other people in similar situations has made me feel less isolated. I try to eat as healthily as possible and this helps my overall wellbeing too. Based on your own experience, is there anything you would like other people living with rheumatoid arthritis to know about living with the condition? I would advise anyone living with RA to get as much support as possible. The support I needed wasn’t available to me when I was diagnosed but I know it would’ve been greatly appreciated at the time. As difficult as it is to see at the time, the good days will come again and the pain will get better. Be as open as possible with your loved ones. Tell them how you feel. This will help you feel less isolated and alone. Reach out on social media and find your RA community. There’s so much invaluable support out there waiting for you! Don’t give up. You can live well with your rheumatoid arthritis.

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en färgstark grafik som visar en varierad grupp människor

Living Well – Make Wellness a Part of Your Everyday

By Featured, Living WellNo Comments

Hi, welcome to Living Well. It’s nice to have you here. Living Well is Sidekick Health’s online magazine. Here, you can find content on how to live well when living with a chronic condition. We only create content we believe in, and we want everything you find here to either inform, support, or motivate you. Discover right here what it means to live well and what you can expect to discover on our platform. Thanks for stopping by. What does Sidekick do? Living with a chronic health condition can impact many areas of your life. In addition to your treatment and symptom management plan, your behaviors and lifestyle choices can play a huge role when it comes to your health and overall quality of life. With this in mind, Sidekick creates and develops digital health programs that are designed to help you take back control of your health. Sidekick has developed programs to support people living with a variety of health conditions, including breast cancer, rheumatoid arthritis, Crohn’s disease, and much more. You can discover which Sidekick is right for you here. At Sidekick, we know that people do better when they’re engaged in the care they need. That’s why our personalized approach to digital health empowers our users to make informed decisions about their treatments and health options. Sidekick’s programs encourage you to build positive daily habits that can have a long-lasting impact, paying attention to things like stress reduction, sleep quality, and physical activity. The programs also feature educational content that can help you understand and cope with your condition better. What’s more, with certain programs, you’re able to talk directly to a trained health coach who will provide you with consistent support and keep you on track to achieve your health goals. Sidekick’s products and platform are built on science and rooted in behaviors, so when a Sidekick program is used in combination with traditional treatment, positive health outcomes may be much more likely. What does it mean to live well? To live well means to live in a way that is healthy for your mind and body. But we understand that this is easier said than done. We’ve all got a lot on our plates, and it can be tricky to manage to eat right, exercise, get enough sleep, and respond to stress in a healthy way all the time. This rings even more true for people living with chronic health conditions. Sometimes, having a Sidekick could be just what you need. That’s why we created Living Well. Living with a chronic condition can feel stressful, isolating, and often overwhelming. We know that there’s so much power in being heard and feeling seen. The content on Living Well is designed to provide you with knowledge and support to help you navigate your health journey. You’ll also find real stories from real people living with chronic conditions, as well as informative content created and reviewed by experts. When you read Living Well content, we want you to feel inspired and motivated to live well. You’ve got this.
Who is Living Well for? Living Well content is created with the following audiences in mind: People living with chronic health conditions, Caregivers and members of support networks, Healthcare professionals. Having said that, absolutely everyone is welcome to learn and discover how to live well. Who creates the content? Living Well content is created by a diverse and creative team of professionals. Sidekick team members create content internally and also work together with a wonderful network of experienced health writers. Living Well content is internally reviewed by Sidekick’s medical doctors and health coaches, so you can be sure that what you’re reading is medically accurate and true to Sidekick’s vision. We’re also proud to collaborate with Sidekick users who are living with chronic conditions to share their stories and experiences. If you’d like to stay in touch, sign up for the Living Well newsletter right here. Get information on how to live well delivered directly to your inbox every month. We hope you’re excited about learning how to live well. It was good to see you! Now, have a look around and see what else there is to discover.

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a pink graphic of two breasts

How to Process Your Breast Cancer Diagnosis: Step by Step

By Breast Cancer, Emotional support, Featured, Health Conditions, NutritionNo Comments

When you’ve been diagnosed with breast cancer, it can often feel like the rug has been pulled out from under you. A diagnosis is life-changing and can feel like a heavy burden. We understand that post-diagnosis, you’re probably dealing with a lot of difficult feelings like isolation, stress, and even identity struggles. Although it may feel like it at times, you’re not alone, and your cancer does not define who you are. In this article, we’ll share some tips on how you can process and cope with your breast cancer diagnosis. The first step towards living better with breast cancer is accepting your condition. Then, you can work towards finding joy in the everyday and making positive changes to improve your quality of life. You’ve just been diagnosed with breast cancer. What now? Many people before you have been on the receiving end of a breast cancer diagnosis and have managed to make it through each day. Reflect on this as a reminder that you’re not alone during your journey. Understanding what lies ahead is an important part of processing your current situation. When it’s time for your first breast cancer check-up appointment, consider asking your doctor the following questions: What treatment method is recommended for me? Where and how will I receive treatment (e.g., chemotherapy or radiation)? How long will it take? What are the most common side effects? How do I know if the treatment is working? In addition to asking these questions, it’s a good idea to prepare yourself as much as possible before your appointments. A breast cancer diagnosis has huge emotional side effects, so it’s normal to feel overwhelmed or nervous before appointments. Check out this article on how you can make the most out of your check-ups and reduce stress levels in between. Your healthcare team is there to support and help you during this time, and so are your loved ones. Reaching out to your support network can really help limit some of the difficult emotions you might be experiencing. Getting help with household chores, administration, finances, division of roles, and day-to-day planning could make a big difference. Be sure to read more about building an effective support network when you’re living with breast cancer right here. Support comes in all shapes and sizes. If you need a bit of extra help but aren’t sure of who to ask, try reaching out to the following: Your doctor. The nurses involved during your treatment. Professional psychological support (e.g., from psycho-oncologists). Your partner. Your family. Your friends. Your work colleagues. Other people who have been diagnosed with breast cancer. How to cope with a breast cancer diagnosis. Because a breast cancer diagnosis is so far-reaching, it can often end up affecting you in ways you never thought of. With this in mind, we’ve prepared a list of tips to help you in your everyday life. These tips cover a number of lifestyle areas, from physical activity to mental health and are designed to help you live better when living with cancer. Creativity. Mentally coming to terms with your breast cancer diagnosis is hard work. Understanding and recognizing the vast array of feelings you’re dealing with on a daily basis can be super tricky for you and those around you. Keep in mind that your feelings are valid, and it’s okay not to be okay. You can read more about that here. It’s good to allow yourself to experience both negative and positive emotions and to find a way to express them in a healthy manner. This can be done, for example, through creativity and movement. Why not try some of the following creative methods to express and process your feelings? Letting the tears flow when they come. Painting. Sports and other forms of movement, especially outdoors. Dance. Listening to or making music. Keeping a diary. Create new habits & goals. When you’ve been diagnosed with a serious condition like breast cancer, you may feel like you’re transforming from “person” to “patient” and losing your identity. Feeling out of touch with yourself can have a big impact on your self-esteem and may lead to more serious side effects like anxiety and depression. Many people who have breast cancer feel that their lives revolve entirely around their condition. There may even be days when you struggle to recognize yourself. On days like these, it’s all the more important to practice self-love and kindness. Remind yourself that you’re still you. Your cancer doesn’t define you. Let the negative thoughts have their say, but don’t let them take over. You are and will always be yourself, even after a breast cancer diagnosis. Forming new positive habits will help you on your journey. Think about what boosts your everyday happiness. Are there any special goals you have for yourself or things you’ve always wanted to try? If you feel up to it, now is the time to put yourself first and find joy in every day. Practicing mindfulness is a great way to learn how to embrace the present moment. Mindfulness can also help you to reduce stress and improve your overall wellbeing. Meditation, for example, is a positive habit you can make part of your daily routine. Find out more about the benefits of mindfulness right here. Intimacy & relationships. Finding comfort in the relationships you have with your loved ones can be a great way to deal with feelings of isolation and stress. This could include your family, friends, partner, or even colleagues. As we mentioned above, help and support can come in many forms. We know that it’s not always easy to ask for help, and sometimes, just having a chat with someone can work wonders. The people in your life care about you and love you. Enjoy your time together and take comfort in their company. In the period after your breast cancer diagnosis, your need for intimacy and closeness may also change. Some days, you might crave tenderness and gentle physical contact. Others, you may feel vulnerable and want space. Try to recognize your needs and take them seriously. That way, you’ll be able to seek the right support and communicate your feelings better. Seek hope, joy, and meaning. A breast cancer diagnosis and the treatment that follows can take their toll on both body and mind. It’s normal to feel physically and mentally unsettled. There will be good days and bad days throughout your journey, and that’s totally okay. A great way to maintain a mental balance during this tricky time is to try and find joy in every day. Ever heard of micro-joys? They’re the little things in life that spark joy. Being diagnosed with a life-changing condition like breast cancer can really cause your sense of perspective to shift. Try focusing on the simple pleasures that make you happy, even if only for a little while. Micro-joys can be anything from (literally) stopping to smell the flowers, eating something delicious, a hug from a loved one, or listening to your favorite song. There are a number of other ways to find joy in the everyday. You could also try: Engaging in open conversations with someone you trust. Practicing self-care: there are days when this will feel tricky, but remember, no act of self-love is too small. Having confidence in yourself and your healing journey. Accepting help. Different forms of relaxation, like guided meditations or yoga. Practice compassion & patience. A lot of people who have experienced breast cancer report feelings of loss and grief both post-diagnosis and after a full recovery. Grieving for your health and your pre-cancer self is valid and natural. Breast cancer survivor, Cordelia, experienced a mourning period during her recovery time: “It would have helped so much if someone or something external to me had validated how I was feeling and said, ‘Well, of course you will feel strong grief for what you have lost, and of course you can’t be who you were. How could you be after all you have gone through?’” Allowing yourself enough time to process your diagnosis is vital. Initially, your first instinct may be to go straight into survival mode and start trying to deal with all of the different consequences of your situation at once. Pause, take a breath, and be patient with yourself. Allow yourself to feel and express the way you’re feeling. There are a lot of positive lessons to be learned, such as setting boundaries and practicing open communication. Patience is a factor that will help you a lot right now. It does so much good to take all the time you need. With a little compassion for yourself and everything you and your body are going through, your healing journey will be much smoother. A great way to practice self-compassion is by celebrating small successes every day. You could try recording them in a diary, for example. If you have a day where you feel overwhelmed or stressed out, it’s a wonderful, nurturing habit to flip through the pages again and remind yourself of your strength. Reflect on what you’ve already accomplished and achieved and be proud of yourself. Healthy habits. By eating healthy and getting enough rest, you can help your body and mind to better deal with stress, fatigue, and pain. Eating healthy helps you to stay healthy. The emotional side effects of a breast cancer diagnosis can trigger feelings of exhaustion, and cancer treatment itself can also cause fatigue. If you feel the need to rest and lie down, allow yourself to do so. Resting is good for your recovery, especially right after inpatient treatment. “Resting is not laziness, it’s medicine.” Glenn Schweitzer. Sleep keeps your immune system in check and gives your body a chance to do some healing overnight. While getting enough rest is vital, it’s also invigorating to get yourself out into nature and engage in physical activity. Even if it’s just for a few minutes. Every little step counts. You can read more about the benefits of physical activity when living with cancer in this interview with a physical therapist. Conclusion. Your journey with breast cancer is unique to you, and there’s no right or wrong way to feel. There will be good days and bad days. The above tips are designed to help you find a little bit of comfort during this turbulent time. You may also find comfort in some of our other breast cancer articles. Explore them further right here.

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a photo of Emily who was diagnosed with rheumatoid arthritis at the age of thirteen

3 Things My Rheumatoid Arthritis Has Taught Me: Emily’s Story

By Emotional support, Health Conditions, Living Well, Rheumatoid ArthritisNo Comments

Emily was diagnosed with rheumatoid arthritis at the age of thirteen. Being a teenager can be tricky at the best of times, but dealing with the diagnosis of a chronic condition meant that Emily had to make a lot of changes. Emily shared her story with us, telling us all about her diagnosis and how it impacted her physical and mental health. Now, at the age of 24, Emily has learned to accept her RA as a part of her. She leans on her wonderful support network whenever she needs to and is now working to educate other people about the effects of rheumatoid arthritis. Keep on reading to discover what Emily learned from her rheumatoid arthritis and how her life has changed since being diagnosed. There are a lot of misconceptions about Rheumatoid arthritis and the people that have it. What would you like other people to know about the condition? One misconception about rheumatoid arthritis is that only old people can get it. I was diagnosed with RA at the age of thirteen years but had symptoms for around a year before. I was only properly diagnosed after my mum had to pay for me to be seen. Doctors were telling me it was growing pains and that my symptoms were psychological. It was like the doctors wouldn’t really believe the amount of pain I was in. To be completely honest, before I was diagnosed or even experienced symptoms, I also thought that arthritis was only for the elderly. I’d never heard of young people having it. A lot of people assume this because there’s not enough education out there. Another misconception is the difference between rheumatoid arthritis and osteoarthritis. The majority of people think that these are the same and often think that all types of arthritis mean you just have aching joints when this is not correct. Osteoarthritis causes joints to become stiff and painful, whilst RA is actually an autoimmune disease, it attacks healthy cells in the body. Almost anything in the body could become affected by RA; it’s not just a case of aching bones. Because my immune system is so low, I have to be up to date with all non-live vaccines. Otherwise, I could become seriously ill. A common cold could cause me to be in bed for weeks as I experience symptoms much more intensely. Getting sick can also trigger a flare-up with my RA. After you were diagnosed with Rheumatoid arthritis, what changes did you have to make in your daily life? I had to adapt to a completely new social life. Before I was diagnosed, I loved doing things with my friends. At the time of my diagnosis, I was a teenager so I loved going shopping, to the movies, having sleepovers with my friends, horse riding, and dancing, but I had to slow down when my pain started, and once I was diagnosed. I couldn’t do much with my friends anymore socially. My condition meant that they’d have to come over to my house or I’d have to go to theirs. If I did actually end up going somewhere with them it meant I’d have to take a different journey. They would usually take the bus or train. I couldn’t do this because of the walk to and from the station. My mum would have to drive me, which doesn’t seem like a huge deal, but I still felt I missed out in some way. I had to adapt to using mobility aids, especially a wheelchair. I had to have a spinal fusion which meant that I had to learn how to walk again. I was especially weak around this time. I did sometimes feel embarrassed using a wheelchair or walking stick at the age of thirteen because it felt like everyone was staring at me, and some people actually were. I could feel people looking at me as if to say, “you don’t need that; you look fine.” I also had to go from rarely seeing a doctor to going to the hospital pretty often. I remember one day when I had to visit three different hospitals. It was extremely tiring. Another thing that changed was my independence. Thirteen is usually the age when you start becoming more independent, but my life was going completely the opposite way. Most days, my mum had to help me get dressed, help me 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. Can you tell us about some of the feelings you experienced after you were diagnosed? Once I was diagnosed, everything happened so quickly. I had a halo traction and spinal fusion because the RA affected my spine. I didn’t really have any time to experience feelings. It wasn’t until I was around fifteen/sixteen that I started to experience the aftermath of my feelings. I suffered really badly with my mental health. I experienced a lot of loneliness and isolation. I didn’t know anyone else who had RA, and whenever I went to see my consultant in the clinic, I was always the youngest person there. This really hit me hard. I also started to suffer from depression and had very dark thoughts. I couldn’t really accept that this had happened to me. I was lucky enough to have a really great childhood growing up due to my mum and brother. But I started experiencing a lot of anger. I lashed out a lot verbally, especially towards my mum. I didn’t have access to the right mental health support to help me deal with my RA, so I really felt like I had been thrown in the deep end. A lot of the depression I experienced was triggered due to bullying, I was bullied in school for having RA. I was mocked for the way I walked and I got called a lot of names. Rheumatoid arthritis can impact so many areas of your life. How do you deal with the mental and emotional side effects of the condition? Luckily, I have a great support network – including my family, friends, and fiance – who are able to empathize with me and listen to me when I need to talk about things. I still struggle a lot mentally to this day with having RA and with everything I went through, but luckily I’m on medication for my mental health, and I’m also in therapy with a lovely therapist with whom I was able to learn to trust. Having a good support system helps so much. For me, having family and friends who let you chat or rant about things without questioning and just lending a listening ear is so important. Whenever I’m really struggling with my mental health, I always do things that make me happy or take my mind off my condition, like skincare, watching my favorite movie, eating my favorite food, etc. These things help to bring a bit more joy into my life. I also think it’s very healthy to cry and get upset. I still mourn the body I used to have and get upset about it. I do need to cry about it now and again, but it’s better to get my feelings out than to ignore them and keep them in the back of my mind. If you could go back in time, what would you like to say to your younger self who has just been diagnosed with RA? That it’s not the end of the world. Doctors always told me that I might grow out of it in my teenage years. I hoped I would, but I never did. And that’s okay. Part of me is glad that I do have RA because now I volunteer for amazing organizations for people with RA. Through this experience, I’ve met some wonderful people who also have RA and are able to actually understand what I’m going through instead of just sympathizing. I’m also now able to help educate people on RA, and that young people can actually be disabled. It’s so rewarding helping people to understand RA and disabilities a bit more. Having RA has really opened my eyes and helped me to appreciate the world more. I would love to tell my younger self that everything is going to be okay and that it will all work out. What has your Rheumatoid arthritis taught you? Do you look at life differently because of your condition? My RA has taught me to appreciate the little things in life. For example, brushing my hair myself or doing my makeup is a huge achievement. It’s really shown me to be kind to everyone because you really don’t know what anyone is going through at the end of the day. On the outside, I look well but in reality, strangers don’t know what I’m going through or what I’ve already been through. It’s shown me that having a condition like RA is not the end of the world. In fact, I’ve learned to embrace my condition and accept that it’s a part of me. Like I said before, I appreciate the little things in life now. I love watching sunrises and sunsets, watching the clouds, looking at nature, and spending time with friends and family. Life can definitely be cruel, but it can also be beautiful.

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a photo of physical therapist Haukur

Living With Breast Cancer: A Physical Therapist Explains Why You Shouldn’t Skip Your Workout

By Breast Cancer, Featured, Health Conditions, NutritionNo Comments

The Breast Cancer program from Sidekick Health was created by people with cancer for people with cancer. Our dear Sidekicker, Haukur, is a physical therapist and clinical researcher. He also has personal experience with cancer and spent a great deal of time working with cancer patients throughout his career. Haukur is passionate about physical activity and getting moving, both of which are key elements of Sidekick’s Breast Cancer program. We sat down with Haukur to find out why physical activity is so important when you’re living with cancer and what it can do for your overall quality of life. He also provides some expert tips for exercise newbies who don’t know where to start. Thank you for joining us, Haukur. Can you tell us a little bit about yourself? Hi, thank you for inviting me. I’m a physical therapist and also have a master’s degree in sports and health sciences. Both degrees focused on something called exercise oncology. This is a field focused on how to use physical activity and exercise to optimize the health and wellbeing of cancer patients, and those who have had cancer in the past. I became interested in this field when I got diagnosed with cancer while I was studying to become a physio. After graduation, I worked for 12 years in cancer rehabilitation, working with people with all types of cancers, both during and after their treatments. You helped create Sidekick’s Breast Cancer program, which focuses a lot on physical activity. Can you explain why physical activity is so important for people living with cancer?Back in the day, doctors and nurses would tell cancer patients to rest well when they got their diagnosis and not to exert themselves too much. This was well intended but poor advice. Physical activity has been shown to improve almost all aspects that affect the quality of life of people living with cancer. Having cancer can have a detrimental effect on your quality of life, and being physically active and exercising can improve that greatly. What are the main benefits of physical activity and getting moving for people living with an illness or chronic condition? Physical activity can reduce cancer-related fatigue, which is a debilitating condition that can affect you physically, mentally, and even emotionally. It helps to alleviate anxiety and symptoms of depression. It can also work against some side effects like cardiotoxicity, worsened endurance, loss of muscle mass, and more. Most importantly, in some types of cancer, being active can help with improving prognosis. In your experience, is it often the case that people underestimate the importance or impact of physical activity when it comes to their health? Unfortunately, yes. People still believe that resting and avoiding physical challenges are necessary when they’ve been diagnosed with cancer. Many people also believe that it’s unsafe to exert the body when they have cancer. But for most people, it’s quite safe, and with the right support, anyone can find the type and level of physical activity or exercise that’s right for them. For most people, the easiest thing to do is to go out for a walk or do other similar daily activities. What would you say to someone who has never been into exercise and has no idea where to start? Go slowly. Start with something manageable, like my example of going for a walk. When living with cancer, it’s great to ask your healthcare team if there’s something you should avoid or adjust when it comes to exercising with your condition. Be patient with yourself. It takes time to create new habits, especially habits that require physical effort for the body. Know that everyone makes some missteps on the way, but just keep on going. At some point, your week will feel incomplete without getting in some exercise on a regular basis. Do you have any recommendations for types of movement and exercise that cancer patients could incorporate into their daily routine? It’s best to include something that gets the heart pumping, which is what we call cardio. This could include walking briskly, riding a bike, swimming, hiking, or jogging to name a few examples. Preferably, do these types of exercises most days, but aim for at least three days a week for about 30 minutes or more if you can. If doing your bout of exercise for 30 minutes in one go is too much, you can start slower by breaking it down to two or three bouts of 10-15 minutes. Whatever works for you. I’m a big fan of strength training, and it’s also very beneficial for people with cancer. Strength training is also called resistance training as it puts resistance to movements making them harder to do, and over time, the body adjusts and becomes stronger. There’s a well-known Greek legend about Milo of Croton, who carried a calf until it became a fully grown ox. This story teaches that by starting with something manageable and continuing with slow, progressively increasing challenges, we can improve. Something else worth mentioning is that when in cancer treatment, the focus shouldn’t really be on improving as much as it should be on alleviating the symptoms and side effects through cardio and resistance training. Doing stretches and balance training, like yoga or tai chi, is also great. How can Sidekick’s BC program provide support to people living with breast cancer? The program gives holistic support and education about what one can expect to go through during this journey after having been diagnosed with breast cancer. The program is based on understanding where you are and what you need at this crucial time in your life. It helps to answer many common questions that people with breast cancer may have. Most importantly, by using the program, you can work on building new habits that are aimed at improving your welling, quality of life, and overall health during and after breast cancer treatment. Those health-promoting habits include learning self-management when it comes to symptoms and side effects, good nutrition, physical activity, sleep hygiene, stress management, self-compassion, and mindfulness. If you’re living with breast cancer, explore our other articles on how to live well when living with cancer. We cover a range of topics from looking after your mental health, making the most out of your breast cancer check-ups, and how to process your diagnosis. Explore Living Well to discover more.

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