Coming Out

This is a ‘coming out’ blog. I am doing away with the bullshit in order to explore what it’s really like to live everyday with an illness and be constantly in and out of recovery. Having M.S or Multiple Sclerosis? - (mustn’t forget the question mark – it is apparently an ‘inconclusive’ diagnosis) is like any other form of recovery – alcoholics never stop being alcoholics, just like I will never stop having this illness.

That’s a very hard thing to write. You’d think it would be easy, but even after 17 years I struggle with acceptance of this illness. I partly blame the medical profession. Actually I fully blame the medical profession who have no concept of the lived experience of illness or disability. Empirically minded, they look at a list of test results and conclude that ‘on paper’ I shouldn’t feel the way I do. It has taken me this long to find a neurologist who says that he cannot possibly hope to understand what my illness feels like. He accepts that there are things he doesn’t know. Together, we look at how my illness is making me feel, and try to deal with it. Up until now all neurologists seem to be labouring under the misconception that if they can’t see or measure it, it does not exist. I have lost count of the times I have baffled a doctor with my symptoms and just sit there silently while they tell me that I shouldn’t be feeling that way, according to their calculations.

I figure that since my illness will always be with me I could learn a lot from the 12 Step programme. The programme addicts use to aid recovery and modify their behaviour and the first step is acceptance.

17 years ago when I was told I had M.S it was a huge shock, but also like the thing I’d been expecting all along. Like some people say, when they met their future husband or wife it felt inevitable, M.S felt inevitable to me. I wondered if I’d caused it by reading weird Victorian girl’s fiction where the heroine romantically becomes a cripple and learns about life through her adversity. I read What Katy Did several times and, although it was a bit perverse when I think about it, actually coveted her sick room. Her crippled Cousin Helen had told her that she should make her sick room a fun and welcoming place to visit ( so the normals weren’t weirded out by all that pesky sickness). There was Beth in Little Women, learning patience, gentleness and fortitude while she quietly wasted away. Then there was the ‘Queen of the Girl Cripples’- Pollyanna. Pollyanna was an orphan who changed the life of her miserable Aunt Polly and all her servants by being pretty, funny and sickeningly cheerful. Her trick was to play the Glad Game which involved thinking of the situation you are in and finding something to be glad about. I tried this. I wrote a blog about finding something to be happy about. It lasted a while, but eventually I got so pissed off with being cheerful I cried for three days and decided to try therapy instead!

All of these role models had something in common – they all had an illness that turned them into this wonderful, saintly person who everyone loved and wanted to be around.

I imagined myself lying in a beautiful room with no evidence of illness, graciously accepting visitors and changing their lives by my pious and patient example. I guess it didn’t help that we were church goers. There are a couple of other things these heroines have in common – their illness didn’t last, because they either became miraculously better or they died, and their illness was pretty and invisible. In my experience illness was not pretty or very dignified. My first sick room was the local cottage hospital after experience extreme pain in my leg and an inability to walk. I didn’t look clean and freshly washed – usually I was in yesterday’s pyjamas with my face stuck to my pillow after a particularly sweaty and dribbly afternoon nap. My hair was usually vertical, rather like that strange bloke in Dr. and the Medics, and instead of a room decorated with flowers they were greeted by a sick bowl, some used gloves and an open tube of KY Jelly. I’m not sure Pollyanna, Beth or Katy had to suffer the indignity of some strange doctor putting a gloved finger up their bottom to see if their sphincter muscle was still working. I was soon disabused of the notion that sickness was in any way, pretty, dignified or inspiring.

Three years later, when I lost all feeling down my left side, I was not even told I had M.S at the hospital. I was scanned, poked and prodded then given a high dose burst of intravenous steroids to reduce inflammation. Steroids soon had me bouncing off the walls and I was discharged only to bounce right back again with the same issues. At one point I think they seriously thought about telling me because they took me in a private room. Then when they got there, they seemed to bottle it and let me go home. Thoroughly confused I went home wondering what it was all about. It was my GP who told me, in a routine appointment where I was discussing my hospital stay. I noticed the GP frowning and looking more and more bewildered. Eventually he stopped me and said:

                ‘You do know they think you have M.S?’

This threw me completely. I knew nothing about MS except a vague memory of the old MS Society posters depicting a woman with her spine torn out. Wow, I thought, that must be awful. Fancy feeling like your spine’s been torn out. Then I thought no more about it. Now I was wondering when the spine tearing would start. He explained to me what M.S was in the usual terms of an electrical wire – your nerves act like an electrical wire conducting messages to and from your brain to the rest of the body through your central nervous system. Each nerve is covered with a type of insulation called a myelin sheath which protects the nerves. M.S strips that sheath leading to nerve damage and faulty messages to the rest of the body. I listened, but somehow could not relate what he was telling me to what was happening in my body.

My G.P also told me that it was old-fashioned NHS practice for neurologists not to tell their patients they have M.S. Apparently, if a patient is expected to have the relapsing/remitting or benign form of Multiple Sclerosis, they do not always tell them the truth. The wisdom of this is that if the patient does not know they are ill, they won’t be ill. It was mind over matter or in this case mind over myelin. This denial of the truth would be good for the patient because then they would not act all inconveniently ill and disabled, but miraculously carry on being productive and living the life of a ‘normal’. Alongside this big slab of denial came the first of several platitudes; people with M.S can lead ‘relatively’ normal lives. This was a complete contradiction in terms – if the life I was going to live was so damn normal, why were they hiding the truth from me? However, the message of denial and determination, alongside the gung ho language of physical rehabilitation, set in place my way of dealing with the problem. So, instead of acceptance I decided to live life along these terms - ‘if I ignore this it won’t exist’.  Do I really need to tell you that this did not work?