When I decided to tell my story I wondered who would actually be interested in it. Maybe it would appeal to those who also have my condition, so that’s a handful of people. Maybe it would appeal to those who are interested in learning more about rare conditions, again, not many. To tell a story it needs to appeal to more otherwise it’s not worth telling, surely?
I began at the beginning of when my illness took over my life, but in fact I’d had quite a few issues with health throughout my life. I felt like a hypochondriac. Every issue I went to my GP with was brushed aside and I was never taken seriously. My blood pressure was always fine, my temperature was good, I was a decent weight and more prominently, I didn’t look ill.
Since becoming disabled and connecting with a like minded community I have discovered that it is normal for people to struggle with getting doctors to take you seriously unless you are showing a drop in your vital signs, or bleeding out. Blood tests and more intrusive examinations can rule out more ailments but are always taken as a last resort unless you are seriously ill.
Not looking ill doesn’t mean you are not ill. So many people suffer a lot but can also have days which are pretty normal. This makes others think that they are not as sick as they really are.
A lot of people use wheelchairs and scooters because they have difficulty walking any kind of distance. It doesn’t mean that they can’t walk. Even I can walk, although not very far. You may see me walk from the living room to the bathroom and wonder why I can’t walk to the shops if I am able to walk. The truth is, my body wouldn’t let me. I would not even get past my neighbours house before my body gave up on me completely, and then what?
Migraines can be debilitating. I’ve suffered migraines where I’ve not been able to even move because of the pain. Turning my head in bed has caused me to feel nauseous. I have gone to work with a migraine because people don’t think they are serious. I have been sent home from work with a migraine because I’ve not actually been able to function. A true migraine takes away your ability to do anything, I cannot even read or watch the television. Yet, it’s still not considered a serious illness because the brain looks okay! I’ve had brain MRIs and only a couple of times have they found activity (bleeding) most of the time my brain looks fine. If it looks fine then how can you be hurting so bad?
I could go on, there are so many conditions that keep you looking ok on the outside, mental health is also one of them and probably one of the most important. Since getting sick I’ve found a distinct correlation with my mental health and the amount of pain I feel. When I am really depressed the pain is unbearable. When the pain is unbearable I become really depressed. It’s a vicious circle.
Hopefully after reading my story I can help you find a way of healing your pain. Working from the inside out, from the past to the future. Everything in our life has an affect on our health and it’s how we deal with it that can make it better or worse. I want to begin my story from just before I became sick.
Writing on Substack
This is a new platform for me. I have already written so much I want to share but was unsure of how to go about it. I hope you will stick with me and follow my story. I hope you will be interested. My purpose is to tell my story and to hopefully help others feel less alone. As I progress I will hopefully feature helpful articles and stories from other Stiff Person Syndrome sufferers. For now, I’m finding my feet here so please bear with me.
Found you!