When I first got ill I was still training to become a midwife. I got infection after infection after infection and was on super strong antibiotics for months and months. I would have days where I physically could not get out of bed followed by day or weeks where I was fit to work. So, thinking I was doing the right thing I would go in when I was well enough and work as hard as I could. I did all my studying and wrote my dissertation from my bed. Everyone, was calling me a faker then, my peers, other midwives at the hospital and even my lecturers. I had no official diagnosis, in fact even my then GP was telling me it was all in my head. I started to believe them and was determined to prove them all wrong, so I worked harder. I did more hours at the hospital to up my clinical hours, I studied harder at home and did more shifts at the pub I worked at, to make more money to save. This didn't of course, have the impact I wanted it too. Everyone with M.E knows that rest is key, the way to make yourself better is not to go and work harder, and work more. So what happened? In an effort to prove that I wasn't faking anything I made myself look more suspicious to them. I burnt myself out and it effectively ended my career.
Because they didn't believe me, and because they didn't diagnose me, I will never be a midwife. I dreamed about being a midwife for a long time, I worked so hard and I loved almost all aspects of the job and that was taken away from me by the attitudes of some people and the social stigma of M.E. Of course, I don't know for sure but maybe, if they had diagnosed me sooner or believed I was ill when I said I was things might have turned out differently. I might have intermitted sooner, and spent a year resting early on in my disease, before it progressed so far. I might not of had to spend 18 months bed bound, I might not still have to use a wheelchair. I might have a useful degree instead of one "unnamed" degree level award. I might be able to run around with my daughter.
It took a further 2 years before someone diagnosed me. Once again down to this "faker" attitude people have towards M.E. I know others have had the same experience, but the one of the GP's at my practice, the one I was registered with in fact, doesn't believe M.E exists. Nor do a few others actually, over the years I have found out which ones and I now refuse to see them. I find this utterly ridiculous that even now that the condition is recognised by WHO and there are NICE guidelines in place to treat it (not good one granted, but that's another entry) some dr's still refuse to believe it is real. In that 2 years I went from active, studying, working 3 jobs to completely bed bound needing help with everything. I lost my dignity and spiraled into depression, knowing how ill I felt, how much pain I was in and finding no one believed me except my family (and they were a great support). The dr's were telling me it was all in my head, and I had started to believe them. I thought I was going mad. I worked through the pain, I worked through the sickness and the exhaustion until I couldn't do it anymore. Until my body wouldn't let me, and I strongly believe I got as ill as I did, and stayed as ill as I am because of these attitudes toward M.E. Held by everyone, in all walks of life, even professionals.
It isn't just within the medical profession that you have believers and non believers in this illness (for goodness sake it sounds like a religion). It carriers with it a social stigma within society. People call it the "joke illness" even some sufferers call it by this name. Sometimes I feel it's easier to pretend I'm fine instead of explaining whats wrong. Obviously this isn't easy when I'm in the wheelchair. I am seriously fed up with people staring at me and trying to work out whats wrong. Sometimes I don't leave the flat for weeks because it's easier than explaining why I'm wearing sunglasses in the rain. Everywhere I go, I am faced with discrimination in every walk of society and it has to stop. Now.
For some reason this does rub off on me, sometimes I actually feel like a faker, how stupid. I'll sit here on days when I am feeling more well than usual, and I'll wonder if I'm really ok and that I'm just imaging everything. I know this is stupid, and I only have to move again to be reminded of the pain and then I know I am not crazy. This is the problem with conditions that fluctuate you're never really certain of anything. Of what you have, of how you will be one moment to the next let alone one day to the next. Sometimes I wonder if actually I do feel normal occasionally, but then I remember that I have probably just forgotten what feeling well is like. My normal now is just ill, my ill is really ill. Joy.
Filling in benefit forms is a nightmare with M.E/CFS and Fibro. You don't fit into any box and the extent to which someone suffers with the disease, and the symptoms suffered vary so much. I, like the girl in the article, didn't claim benefits when I first got ill. I lived with my dad, and had saved up some money through working as a domestic in the hospital I was training at and as a bar maid in a local pub. I used my savings, I sold my stuff, I relied on my family, anything so I wouldn't have to claim benefits. It wasn't until my dad got made redundant and myself and Chris moved out that I sought help. I had done everything I could, for as long as I could to stay off them. I had done what society had asked. I had paid taxes and now I needed help. There is such a social stigma to being on benefits, especially any form of disability benefit. Its awful when you tell someone that you have to claim benefits and then why, and that why is M.E (which they don't believe in) and they laugh at you or sneer at you or call you fake. It is so upsetting, they don't know my pain.
I suppose it is too much to ask for people to just believe I am ill because I a say I am. The lady in the Guardian article sums it up nicely, "pain is invisible and hard for people to understand". Almost every symptom I have is invisible, and often what people can't see they don't believe. Like the girl in the article, I often hate looking good because people assume you are fine. It's difficult really. Sometimes I wish I had a huge sign round my neck that simply said "disabled" but at the same time I like to have the ability to pretend I'm "normal" sometimes. On the plus side there are a few times when I have felt awful and been told I look good and it has cheered me up, I'm a strange person really!
Just because my illness is invisible doesn't mean I am, it doesn't mean my needs are and it doesn't mean my feelings can't get hurt by what you say.
Anyway, here are mine and Niamh's 366 pictures for today.
Me, in a box ( I could sort of stuck in the box and had to be tipped out of it!)
And Niamh, after she had finished climbing mount daddy.
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