#but its ok bc i have proof u dingo turd

[eggjordie]

I suffer from ???

Recently I was diagnosed with Fibromyalgia and CFS. I find that such a surreal thing to say now, considering in those 8 words is almost 2-3 years of the hardest period of my life, and now its over. Sort of. Kind of. Actually, not really, but that's what people think when I tell them. In 2015 I watched the entire series of House M.D (that’s 8 seasons, 177 episodes in case you were wondering. Here, normally, I would make a joke about not having a life but it was, in fact, my life for a good few months). Generally a person gets sick, doctors don’t know what it is - sometimes they shrug it off, tell the patient and their family its ‘nothing’ - House and his team somehow notice this special case, they go through a series of trial and error while the patient is suffering or perhaps nearing death and then they usually solve the riddle. This is the process many medical shows follow. Sometimes they recognize that the patient may never get well again, despite diagnoses, and its kind of sad and stuff. But life resumes and then it’s time to play the next episode.

This gave me a false hope for my health story. Maybe I’m one of the few who have dealt with the same, but I’d like to share my experience of the grey area of the medical world and the suffering that so many with chronic, invisible illnesses experience. Because it sucks. It really, truly sucks. Spoiler alert! You don't get your own special diagnostics team and noo one tells you of the ‘limbo’ period where you’re floating through tests, specialists and appointments while people around you are trying to figure out what you have. I, albeit childishly, thought life would stop while this all went on. But it didn’t. I still had the worries of rent and bills while I was being tested for a brain tumor. There was still those thoughts every person in their 20′s go through - what will I do, where will I go, what will I achieve - during a short synacthen test and seeing an Endocrinologist. I could go on, but I’ll save you my entire medical history. The fact is, life continues, even when its crumbling around you.

I thought I was dying. It sounds melodramatic, believe me I’m well aware, but I truly did. Yet it was like no one believed me, as if I was in one of those shitty dreams where you’re trying to scream and cry but you cant and people are laughing at you, but it wasn’t a dream. This was where I entered what I call the Judgement Era of invisible illnesses, and it’s an era that has not yet ended. Because suddenly general practitioners were getting bored of my case, my doctor who had studied harder than I could ever imagine to be a medical professional, whom we are told when we are children are trusted to help us when we are unwell, couldn’t figure out what I had. So she started reverting to the usual; you’re overweight, you’re lazy, you’ve been working too hard, you just need to wait a few months its just a - a um, thing, but you’ll be fine, here’s a name to a yoga place it might help, have a nice day. She sent me for tests less and less until eventually it got to The Question. I capitalize that for a reason;

“How have you been feeling lately?”

Now, don’t get me wrong. Mental illnesses are a serious issue and I’m happy that there's more attention surrounding it, but in my case where I certainly did not have a mental illness as a cause for my health issues this Question will forever be the bane of my existence. Because depression is suddenly the safe diagnoses and it angers me, not just for my case, but for people who actually suffer with it. It belittles their suffering. It damages the progress mental illness awareness has made in the past few years. By diagnosing people without depression with depression you are undermining a very serious illness. But, despite my physical symptoms (correct me if I’m wrong, but I’m fairly certain depression doesn’t cause extreme, unexplained pain) this was what I apparently had. I saw quite a lot of doctors and they all reverted to the same thing. Depression.

Ive always been a very positive person, even through all of the shit Ive had to go through in the past few years. People who know me will tell you, I’m not sick because I’m depressed, I am depressed because I am sick. How have I been feeling lately? Is that a joke? How do you think I’d be feeling after all this time. After being told I have a brain tumor, to cancer, to addisons disease, to cushings syndrome, to heart disease and now being told I’m just overweight, lazy and depressed? Pretty damn shit, if I do say so myself. But I couldn't say that, because any inkling that I might be a little bit sad they would refer me to a counselor, clap their hands and say job well done. I knew. I wasn’t stupid.

After so long of dealing with this of course I had done my own research. Dr. Google might be awful for many reasons and I don't condone self diagnosing at all, but sometimes you just have to trust yourself. Because during this period of uncertainty in my life - I had just given up my career for my health, I didn’t know whether I was truly dying or not and I still had a life out of my bed that I needed to try to live - I was being questioned by family and friends. What did I have? Well, I’m not sure. What was the new prognosis that month? When would I get help? I was playing 20 questions with everyone, the same questions I was asking myself. All I could say was ‘I suffer from ???’.

It’s disheartening to say the least. This limbo period where you cant trust doctors or just anyone to believe what you’re pleading so you begin to doubt yourself. And that, in my personal experience, leaves you in a very dark place.

I got the usual advice from friends and family. Try yoga, go gluten free or vegan, have you tried this? Has your doctor tested you for that? What if it’s this? I know they mean well, and I truly did try everything they suggested. People wanted to ‘fix’ me, and that’s okay, but I wasn’t getting fixed. I wasn’t getting better, only worse, and when you cant help someone you care about you get frustrated. Friends started to question whether I really was sick. Well, you don’t look sick today! That’s good, they would say, to which I could only laugh awkwardly and change the subject. I know I didn’t look sick. I’m a damn good makeup artist and my invisible illness is damn good at being invisible, but of course I couldn’t say that.

I thought after finding a doctor who believed me and promised to help would change all of this. I can tell you in the weeks that have followed my diagnoses little has changed. I’m still being judged as an overweight lazy millennial; just this morning I got back from a disability job provider appointment crying my eyes out and making a right fool of myself because my provider had concluded in her mind that I was exactly that. I’m not ashamed to say that it still upsets me. Even after finally having proof of my disability I will probably have to deal with this for the rest of my life but that doesn’t make it any easier. It doesn’t make it any less shit.

My medical story isn’t over. My episode hasn’t ended now I have a diagnoses. It’s still going. Ive had to accept that things don’t change overnight and it’s likely that many of the judgements that I face daily will never change until these illnesses gain more awareness. But now I can say without a doubt that I suffer from Fibromyalgia and CFS, and not just ???

In the end that it makes it a little bit easier.