Catherine M King, a self prescribed chronic illness collector and Australian meme Queen has written us a piece on being chronically ill…
The more you engage with the chronically ill crowd, the more you will find there are certain biases which appear around the diagnosis (or several) you may receive. There can even be judgements about your symptoms and what diagnosis people think you should have, versus what you and your medical team have fought tooth and nail to settle on. The people who possibly have the hardest time are those waiting for a diagnosis. They have symptoms and often they could be self-diagnosed under several different illnesses, and everyone has an opinion for them.
It often feels like there are new trends in illness. Of course, every illness is valid, and if you haven't managed to get a diagnosis, your symptoms are still valid. These are just trends I’ve seen on social media recently, for example. I myself have narcolepsy, (my main diagnosis), but this has never really felt, to me, like a popular chronic illness. As an outsider looking in, I feel like I’m watching as the popular illnesses come and go.
In recent months I’ve seen a surge in gastroparesis awareness as well as lupus coming back into ‘fashion’. Lupus I can understand, seeing as several celebrities (such as Justin Bieber and Selena Gomez) have revealed they have this diagnosis, as if they have been suffering like no other human. Yet I know so many people from social media who live with the diagnosis with no big fanfare. I can not attribute the rise in the popularity of gastroparesis, but only for the fact that social media is still a very imperfect part of the internet.
In the news, movements like #metoo and #timesup have empowered women, not just to stand up to men who abuse their positions, but all injustices to women which are not being spoken about. It is because of this that I believe women's health is finally starting to find its way into the forefront of social media and with that, endometriosis is finally getting the spotlight it deserves. So many women have suffered in silence for too long. I myself have been spared this particular painful illness, but I have so much empathy for those who struggle through it. It’s my hope that endometriosis continues to find the awareness and platform to help reform how women's health and illness/pain is treated and taken seriously. I know I was so lucky to have a doctor who was willing to keep giving me referrals until I found the specialist doctors who could help me the most.
I now have a sense of stability in my life because I have gotten to ‘the optimal best’ in most of my illnesses. I may not be able to work, but my pain is mostly under control, and there is a plan for later if or when I need further treatment. I have stabilised my medication so that I have medication with the fewest negative side effects and these medications help me live with the best quality of life I can currently muster.
The craziest thing is that instead of banding together and supporting each other and our own lives, people try to project their life and ways onto each other. As a rule most chronically ill patients have tried just about everything, even things that we don't believe will have any effect. Even though there is no scientific evidence and I didn’t think it was going to help, I went ahead and paid money for reiki. But we try these things because we have this hope that just the slimmest chance it will help.
In spite of it all, we keep moving forward. There is no choice but to move forward because there is no getting better or recovery for us. There is only moving forward no matter how fast or slow we move. Some days existing is all we are capable of, and people with chronic illness need to know and understand that existing through a day is more than enough. We are not lesser humans. We are not burdens. We have illnesses that are a burden. But a burden by definition is too hard to carry alone and we require help to shoulder the load.
Catherine instagrams at @meme_the_sick_away and blogs here.