Facebook is an amazing social media platform and it helps many people with chronic illness a great deal. There are hundreds of groups and pages about pretty much everything, including medical conditions.
When I was first diagnosed with complex regional pain syndrome (CRPS) and fibromyalgia, one of the first things I did was research the conditions and learn as much as I could about them so I could be my own advocate. At first I tried Dr. Google — bad idea. It was either negative things about the condition or medical journals full of things I didn’t understand. So, I went to Facebook and searched for groups about chronic illness and CRPS and joined them instead.
The help I have received through those Facebook groups has been invaluable. Instead of learning information from a textbook, you get to learn from real people so you know what to expect and are more prepared for things if they go wrong. Plus, you have a support network to turn to when you need it.
I’ve also made many friends through the groups. Some I have met in real life and some are online friends, but they all understand what it’s like to have the same conditions as me. When you have a chronic illness, friends can be difficult to come by and even more difficult to keep because they simply don’t understand your conditions and they get so fed up of you canceling meetups. Some also get bored of hearing about your pain and health issues, despite the fact it is such a huge part of your life.
I think what people without pain don’t realize or understand is that chronic pain is there 24/7; there is no break from it. Sometimes it’s worse than other times, but it’s never not there so it’s constantly in our minds; we can’t separate ourselves from it. It is a part of us and for some reason, other people sometimes can’t accept that.
Despite how helpful Facebook and other social media platforms are, they can also make you feel worse. Facebook has a “memories” function where you are notified of what you posted and what you were doing this time a few years ago. It can sometimes be great looking back at what you have done and achieved, however for someone with a chronic illness, it can also be upsetting. Some memories on Facebook can be of your “old” life before you got ill. They can be images of things you wish you could still do but can’t any longer. They may also be images of happy times in your life and remind you of what life was like when you didn’t have chronic health issues.
Last week Facebook decided to show me a memory from 2011 when I was studying at university. It was an image from before my cycling accident that resulted in CRPS, and it reminded me what a huge change it has been going from athlete to wheelchair user. It took me several years to accept my conditions and accept I would never get better. However, after a few years of feeling sorry for myself, I learned how to deal with my conditions and realized I could still participate in most things, I just had to do so in a slightly different way.
The specific image Facebook showed me was of me participating in a cycling sportive event; I was cycling 100 miles in aid of charity. It brought everything back — all I used to do, how fit and healthy I was, and how much weight I have put on since. It showed me one of the happiest times in my life. It made me realize how things can change drastically in just a few seconds, and it reminded me of how much I have lost and changed due to my health issues. It was a difficult image for me to see and even more difficult when a friend told me it looks absolutely nothing like me. I am a completely different shape, I look fit, healthy and happy, and the biggest thing for me was that I wasn’t in a wheelchair. Instead, I was cycling up a steep hill on a racing bike.
Seeing that particular image put me back in the place I was in before I was disabled. At first, it was upsetting and made me cry, but then I did a picture comparison of then to now. I realized how much I have had to deal with, how hard I have fought to stay independent and get the help I need, but most of all it showed how much I have overcome. I try my best to not let my disabilities define me, I push myself to do the things I want to do and I push myself even harder to do activities even an able-bodied athlete may find difficult.
After seeing the picture, I realized I am now a better person and remembered how much I have overcome in recent years. Going from triathlete to wheelchair user was one of the most difficult things I’ve done. My life has changed in so many ways, but each time I fought and overcame the challenges I faced.
So ultimately, I want to say thank you to Facebook for showing me that I am now a better, stronger, kinder and more understanding individual.