For the past 3 and a half years I have been suffering from a chronic health condition and in that time I am yet to experience a comprehensive diagnosis of what is wrong with me.
Three and a half years ago, I had finished my first semester at uni (all be it being signed off with stress) and was hit with an overwhelming fatigue. I thought it was just burnout, I thought I was low on iron, I thought I would get better. I was wrong. The fatigue continued into second semester, where I was getting more stressed whilst performing in a dance show every night for a week. After that week of dancing, my mum thought I was depressed as I just sat in the living room under a blanket and did nothing. I rarely went back to uni after that and completed the year from home and so I took a year out to recover. That year did not go as expected as I experienced a loss in the family and started to become depressed and anxious. All the time, my physical health also getting worse. Even now, back at a different uni, happy and on medication for my anxiety and mood I have never felt worse. So, what is causing it?
I have baffled my doctors. I have a list of symptoms, but the main ones are fatigue, struggling to get up in the morning, being wide awake at night and heavy breathing to fill my lungs properly. The last symptom has only come on later and so at first it was the fatigue. So, I was put on multiple vitamins to boost them, thyroid medication, blood tests to regularly check my blood levels and in no way did I feel better. I went to a private endocrinologist with no new insight. My mum and I have researched my blood levels and queried some things but all are apparently fine. For the breathing, I have been given a chest x-ray, which came back clear, and an allergy test as my nose was becoming swollen. No one can seem to understand what is wrong with me and all the time I have to get up late and have an afternoon in the afternoon. The current list of eliminated conditions is: anaemia, pernicious anemia, vitamin D deficiency, ME/CFS, diabetes, Lyme disease, Coeliac disease. The current theory of the endocrinologist is hypothyroidism, untreatable by the levothyoxine medication available on the NHS and that I may require liothyronine, which will cost £120 a month for the rest of my life. The GP is not convinced. He thinks it could be a reaction to medication, but even that is a guess. The next step is checking for the rarer conditions, like Lupus, Cushings, anything really where fatigue is a symptom. The fact this could be related to anxiety and depression has been ruled out from the fact I have experiences periods of good mental health and still my health deteriorates.
But what impact does this have on someone, not knowing what is wrong with them. Frequently, doctors will say that you may just have to accept we don’t know the causes or prepare for never getting better, but that attitude seems rather defeatist- especially when minimal avenues have been explored. It is difficult to explain to people that I can’t go out at 10am because I can’t get out of bed, but I should be ok at 11pm. Or that if I keep going I am fine, but when I stop, that’s it, nap time. It is also difficult to receive support when noone knows what they are supporting. University have been very good about it, but I can’t help but feel like I’m a pain. I couldn’t live away from home as I’d never be able to cook tea, so have become very depend on my mum, who I am ever grateful for. It can get you down when realising that all your friends live alone and are independent, meanwhile your mum is having to get you up. You have to turn down opportunities to go out or haggle for a lift because if you get tired you might be too tired to drive back. You don’t want to stop at your friends’ houses overnight because you can’t get up until 2pm and don’t want to get in anyone’s way. All in all, at times it can be lonely and you always feel like an inconvenience.
A diagnosis is the recognition that something is wrong- you’re not exaggerating or making it up, it is a real named thing, You can tell people and they can google it, you can get recognised support for it- possibly even treatment. It offers you a hope that things aren’t going to be like this forever. That you will be well enough to hold down a 9-5 job and move out and have a full life without worrying whether you’ll be too tired to come home. At the moment,there is a brilliant show on Netflix called Diagnosis, where members of the public and medics help to diagnose people yet to find a diagnosis. Watching just the first episode you can see what a diagnosis means to someone- you’re not the only one, not the medical mystery, not untreatable.
I still hope I can find out the source of my fatigue- currently I have come off one of my medications that I started taking around the time this all started. The doctors seemed to think it couldn’t be the cause, but I’m still hopeful. I might be an anxious, tired hypochondriac, but I’m hoping to cross tired off that list soon…
A picture of me I took to show the doctor of how pale I was and my awful eyebags vs. me pre-fatigue condition (photo credits to my little brother)
Diary of a stress-head blog 