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Wednesday, 22 April 2015

In the 'void', pre-diagnosis


Foggy is on his way to Vietnam after spending 2 and a bit weeks travelling along the Gold Coast of Australia. It has always upset Foggy that it took doctors 3 years to diagnose Sally with having M.E. He doesn't understand that doctors have to rule out EVERYTHING else before concluding that the symptoms all add up to M.E. Unfortunately, there is no test for M.E.

Bethan, is a lovely young woman who is experiencing life affecting symptoms that Sally has come to associate with M.E. Sally asked Bethan to write a blog post from the perspective of someone who is in the void of having a dreadful illness, but not knowing why they are struggling, in pain and not knowing what is wrong. She has had blood tests to rule out certain illnesses and doctors are still none the wiser. In the meantime, she still struggles into work and is finishing her undergraduate degree this week (well done!!). Sally has warned Bethan about the pitfalls of self-diagnosing but, other sufferers will probably agree, her symptoms are regrettably familiar.

This is Bethan's blog

What does ME mean for me?

I didn’t know what ME was until I met Sally. And luckily for me, it completely made sense; I finally didn’t feel like I was going crazy any more! I’m a 3rd year university student, I will be graduating this year, and work part time at the library coffee shop, where I met Sally. Ever since meeting, we clicked, and I knew we would become friends instantly.
It was only when I asked about Foggy dog that M.E. became something of importance to me. After finding out what Foggy was doing on his world tour, I was introduced to M.E.,and the fact that it can be life changing.
For 8 years I have suffered from Depression and Generalized Anxiety Disorder. I had done what most sufferers would and associated my fatigue with the disorders and the medication I was on. When it became so bad that I literally couldn’t get out of bed in the morning, I knew something wasn’t right.
After speaking to Sally in great detail, I felt that a trip to the doctors was what I needed;  I booked myself in for later that day.
The doctors (as professional as they were) did not help in the slightest; they told me that my constant fatigue was to do with my mental disorders. I left the doctors in tears, as I felt completely and utterly bogged down…. If the professionals we look to for support had ‘fobbed me off’, then who could I go to now?
The answer was simple; my family, my friends, my educational network.
Just because a healthcare professional didn’t acknowledge my illness, it didn’t mean it wasn’t there. A chat with my parents put my mind at ease instantly, they were so supportive and loving that I knew I would be ok, no matter the outcome. The reaction of my mum who struggled with why, when at home, I would spend hours upon hours in bed.
“I thought you were just being a typical lazy young person… I’m so sorry I didn’t realise!!!”
It was so rewarding to finally have people understand.. I wasn’t just being lazy!! I was actually unwell and, although not diagnosed, I did have an invisible illness. My housemates were next, and luckily for me, they were just as understanding. Next was my educational network, which I thought may be a bit more tricky. Luckily, I was understood; the relief I felt completely made my day.
The pain I was putting myself through, mentally and physically, by carrying on every single day even thought I felt terrible, was far worse than whatever illness I was suffering from. I was in denial that there was anything wrong, and that I was just ‘tired’ and ‘lagging behind slightly’. However, not being able to get up in the morning or needing to sleep for 4 hours every single afternoon was not normal. The constant aches and pains and insanely bad headaches were NOT down to my depression or anxiety and were NOT just a figment of my imagination! It's real even if you can't see it.

I may not have my diagnosis yet but I wear the ME Association wristband. Whether I have M.E. or not; I do have an invisible illness and offer all M.E. sufferers my support and send love and best wishes. I proudly wear my wristband (‘It’s real, It’s physical, Its ME) to let people know that it’s OK to not be OK.

Bethan xx

1 comment:

  1. Exactly my journey; years of sorting out GAD to then realise that there was another condition there too, ME.