“But You Don’t Look Sick”: Living With Chronic Illness
Living with chronic illness is a daily struggle for many people and it is often something that they keep well hidden through fear of burdening others or feeling shame. I have suffered from symptoms of Fibromyalgia and chronic fatigue from my late teens. I never understood why I was so exhausted that I could not go out on a Friday night or out on weekends with friends as I could not get out of bed from working and struggling all week. For many years I tried to appear “normal”, it is something that has been a reoccurring theme that has run through my life right up until today. The truth was revealed in my mid-twenties when I was sent for tests and saw a rheumatologist after being bed-bound in a flare-up.
I have only recently taken the leap to talk more openly about my health on my social media to reach out to others who are in the same position but to also just be brutally honest about what is happening to me and what my life is like to both family, friends, and the world. I think what shocked me the most when doing this was seeing how many people I was already connected with who also suffered from a chronic illness like me, but I was not aware as they had never spoken about it. When I would look at their pages and photos, I did not see a sick person and did not hear them speak of pain or the struggles they face, and that is exactly how my social media was too.
One thing I was scared of (and I think most are scared of) is that no one would care. Who would want to hear about how much pain I am in or how much I struggle with certain tasks? Would people distance themselves and think I was depressing? But I realised that if I had those fears then others must feel like it too. So sharing my experience of chronic pain might help someone also be more open, and that is what spurred me to carry on this path of being transparent. “But you don’t look sick,” is something I and many others hear a lot from people, and it is the worst thing that someone could say as it makes it seem that just because we can walk, or have our hair done, or maybe put makeup on, we lose who we are and our identity just because we are ill.
Chronic illness has massively affected my mental health over the years. I fight daily with anxiety and depression to try and stay in a positive mindset but of course, it is difficult. People have reached out to me and said that they too find it hard to stay positive and find having chronic illness isolating as they have lost friends, have family members who do not understand their illness, and who are sometimes unable to work so they get cut off from the world. Even after 8 years on this journey, I am yet to learn how to live and manage living with chronic pain. Some days it feels as though I am drowning because I am so overwhelmed and just must take the day hour by hour so that my anxiety does not skyrocket. I have had to adapt my life a lot to do what I can and for now, that must be enough.
If you suffer from chronic illness or are interested in learning more, check out these helpful pages here or at this location. You can also find more information here or on this website.