The Diagnosis Dilemna

Being told I had M.E was simultaneously one of the best and worst days of my life. I know that may seem like an odd way to describe the diagnosis of a chronic illness, but bare with me, there's method in my madness.

Way way back in the summer of 2008, when Michael Jackson was still alive, England were beginning early preparations for the Olympics and One Direction were but mere school boys, a young girl shared a bottle of water with her slightly ill friend, thinking nothing of it. That girl was me, and my friend had glandular fever. And while she recovered in a matter of weeks, I've never had a fully well day since. I contracted a bout of glandular fever and never fully recovered- while glandular fever stopped showing up on my blood tests, its affects never truly left me. 

Over my GCSE's an A levels I became the girl that was always ill- I don't think I ever attended a full week of school from that point onwards... my body simply couldn't do it. I was so exhausted I couldn't get out of bed and I was struck down by infection after infection, week after week. And the worse part? Apparently I wasn't ill. But I knew differently, I knew something was wrong. Despite my doctors insistence otherwise, I knew that this wasn't 'normal' and that I wasn't tired just because 'teenagers need more sleep' (seriously I can't tell you how many times I heard this). However, not being a trained medical professional myself, I was just as baffled as they were- I didn't know what it could possibly be.

Then a friend of mine was diagnosed with mild chronic fatigue syndrome and urged me to look it up. I must have spent hours searching through pages and pages of internet information on the symptoms and causes of CFS/ME and it left no doubt in my mind... this was what I had- now I just had to get my doctor on board, which as it turns out, is far easier said than done.

When I mentioned ME to my doctor, she brushed it off and sent me for what felt like my millionth blood test. I felt absolutely lost. I wasn't getting any better, if anything the stress of my A levels was making me worse, and nobody could tell me what was wrong.

After struggling through my first year of uni I contracted yet another bad infection and found myself back in the doctors office that I was all too familiar with. Sitting there, propped up by the desk, feeling faint and confused, I described to her how the fatigue really felt- like my physical body and my energy where entirely separate entities, and just like you may imagine the soul rising from the body, it was like my energy had just upped and left. I was completely drained. At this she took notice, it was like everything I'd been telling her for the past few years had finally clicked and she refereed me to a neurologist straight away.

I had to have more blood tests and various scans to eliminate other illnesses but eventually they reached the conclusion I'd known all along. Why was this a good day, you might ask? Because I've never felt more relieved in my life. If I didn't cry, I sure felt like it- not out of sadness but out of happiness, bizarrely. To have been right all along, to have a diagnosis and to have had people believe me that I was really was ill, was an incredible feeling- after four years of suffering, I finally had an answer.

Getting a diagnosis didn't make me any better, but it also didn't make me any worse. It just meant that finally I had an explanation. I could tell people I suffered from ME when they questioned why I wasn't well enough to do something, or called me lazy. While I officially had an illness, I also now had something to recover from. And while the prognosis may not be entirely positive, I'm determined that I'm at least gonna get some way to reaching my goals.

Having the ME diagnosis has meant I've had the opportunity to see an amazing occupational therapist, a dietician and a specialist neurologist- all of which I would not have had without it. I received help from the university for both my studying and exams and I've gained a lot more acceptance from those around me. Generally, my life's been a lot better, despite being officially ill. So if you think you may be suffering from something similar, my advice to you is to trust your instincts- you know you better than anyone else. And though the process may be lengthy and tiresome, a proper diagnosis really can work wonders for both your mental state and the opportunities available to you. So don't give-up, let somebody you love help and support you through it (this is sooo important- see my post on it here), and get the recognition you deserve.

Good Luck,

Alice

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