Well my journey to diagnosis was long, hard and the closest experience to gaslighting (if not actual gas lighting) I have ever experienced. If you don’t know what gaslighting is you can find out here.
I was diagnosed with ME when I was 21 and Fibro two years later, I do however have diaries that I kept showing symptoms from as early as 15 years old.
When I was 19 I started going to the doctors at least weekly, often multiple times each week. I was told I was depressed (which was very likely was but if you feel sick all the time and no one believes you or will help you then we’ll… duh!). I had basic blood tests, multiple times, to test for things such as lupus, glandular fever and Lyme disease, when nothing showed things like, depression, health anxiety and TATT (tired all the time) kept appearing in my notes. Along with comments like “it’s all in your head”, “you just need to get out more” and “have you tried exercising”. I had to start bringing my dad or Chris with me to appointments because I could no longer trust myself to remember what was said. The saddest thing was that I started to genuinely believe them, I thought that I was going insane. So instead of resting, pacing, medicating and doing things that would have improved and/or cured my illness I worked harder, I did more and I exercised, after all it was in all my head right?
Wrong, I worked myself from functioning, working but abnormally sick and tired to wheelchair and then, finally, bedbound. Unable to walk, unable to feed myself, unable stand light or sound, unable to sit up unaided, unable to stand having people near me. It was was lonely, it was painful and it was horrible. By this point I was at the doctors two to three times a week, with my father both of us saying “this is not normal something is wrong with her”, one visit I was throwing up blood and it was still “all in my head”. Each of these visits made me more sick, made me capable of doing even less for myself and increased the pressure on my dad and Chris.
As I had to withdraw from midwifery I was eventually sent to occupational health, this was when everything turned around, so unexpectedly. The OH doctor was amazing and may literally have saved my life. He went through my records, spoke with me, my dad and Chris, examined me and said those three words that changed my life “you have ME”. He was so wonderful and sympathetic, he literally could not believe the way that I had been treated.
There began my journey no, sorry, my fight to be recognised as a sick person, to get help and to get treatment. But that’s another story for another day. From first symptoms (in those long ago diaries) it took 6 years to be diagnosed, from first doctor visit it took 3. Three years of fighting to be heard, three years of thinking I was going insanse, three years of no one believing me. And three years of deterioration that could have been prevented and effectively being doomed to a lifetime of chronic illness that, some might say, could have been avoided.
Being diagnosed with fibro wasn’t nearly as difficult. I already had a diagnosis, some parts of the medical system were sympathetic and helpful others, were not, but that, again is for a different day. A specialist physiotherapist at a pain clinic poked me in eleven places and *bam* another chronic illness for my collection. But, this was different, you could test for it (in a way) and you could see it (in a way) so I’ve never been doubted. But again, the belief of the medical profession in my illnesses is a post for another day of this challenage.