A Matter of Punctuation

A Matter of Punctuation

Sometimes, in the long slog that is having a chronic health condition, there is a breakthrough that you know is going to change your life. I had a diagnosis of Multiple Sclerosis (with a question mark) for the last fifteen years. Since then I have also been diagnosed with a connective tissue disease and chronic myofascial pain syndrome. That question mark has been the bane of my life. Its amazing how one piece of punctuation can change your life? Since I was first told I had MS in 1995 I have seen that question mark on the face of every doctor, physiotherapist, occupational therapist and welfare worker I have ever seen.

That single piece of punctuation created mistrust between me and every official I have ever seen. It has been very hard to feel disbelieved and made it difficult to explain fully how my illness has affected me. It made me feel like a hysteric or some sort of Victorian invalid who from time to time simply has to take to her bed. When I was first diagnosed I had help from the MS Centre who supported me with benefits help, peer support and information. Then two years later when a new neurologist added that question mark to my diagnosis – despite being unable to find any other reason for my problems – everything changed. I felt like a fraud. Even friends became confused and fed up with the ‘is it/isn’t it’ status of my health. I even asked the neurologist if it was a psychosomatic illness and if it was would he refer me to a psychiatrist. He assured me something neurological was going on, he just didn’t know what it was. It has been like this since that date. People close to me, who had seen how ill I was at the beginning, just accepted the original diagnosis and carried on as normal. My husband Jez, who had primary progressive MS until his death in 2007, never questioned what was wrong with me. He recognised the fatigue, the weakness in the muscles, the pain and relapses and always regretted that while help was forthcoming for him, help for me seemed impossible to find and it was all down to that damn question mark.

His rapid decline and death overshadowed my problems to such a degree I was put on the backburner. I had the same problems, but his eclipsed anything I was dealing with. I wrote in my book ‘Happy Endings’ that after his death I was so euphoric that my time was my own again that I tried to do  things I wouldn’t even have been able to do before I met him. The leg spasm, weakness and fatigue became even more evident, because now there was only me to deal with. For all this time we just continued to treat symptoms when they flared up and consultants scratched their heads and looked beat. When I remarried in 2009, my problems came to the fore again because I was always meeting new people, new in-laws, new friends and I found myself having to explain over and over again.

Yes, sometimes I use crutches and sometimes I don’t. Some days I am so stiff I can’t get out of bed while other days I can walk the dog for half a mile. There were parties I couldn’t dance at for fear of losing my balance. Other times I would turn up on crutches for everyone to ask ‘what have you done to yourself?’ The question after that is always a killer: ‘I hope it’s nothing serious?’ It turns out that trying to cram three obscure illnesses into a conversation is a bit of a party pooper. I have seen people cross rooms to avoid talking to me, or pop to refresh their drink and never come back. People simply do not know what to say and whatever they did say rubbed me up the wrong way – my all-time favourite being ‘well, you look well to me’. The sarcastic reply ‘oh, well several neurologists must be completely wrong then’, was often on the tip of my tongue. I questioned myself all the time: did I really need crutches today, do I really need that painkiller, am I making too much of this? This situation was not helped by the person I loved most casting doubt on my illness and wondering if I didn’t ‘play on it’ a little bit or even ‘wallow in it’. Learning that he found my illness so alien he could not be with me, was one of the most hurtful conversations of my life. It has been the ultimate in a long line of rejections; the way I am is not acceptable.

This morning’s visit to the GP was fairly routine, but has changed all of these feelings by simply removing a piece of punctuation. I started seeing a different doctor in the practice a few months ago and we were reviewing my medication when she asked ‘do you take baclofen for your MS?’ I must have looked confused because she repeated the question and turned the computer screen round to face me. She had been reviewing my medical notes and where it previously said nothing it now said at the top of the screen a code and the words ‘Patient has diagnosis of MS’; there was no question mark. We discussed the rest of my meds and my knee which has decided to swell twice the size of the other one and will not straighten. She asked if I saw the MS nurse and I explained that the addition of a question mark to my diagnosis meant I received no help and support except seeing a neuro once a year. Since that question mark I had lost my rehabilitation team, hydrotherapy, regular physiotherapy and I felt like I had lost the trust of my peers who felt I was no longer one of them. I left with an agreement that once an orthopaedic surgeon has seen my knee she would refer me to the rehabilitation team. It may have been routine for her, but that appointment shifted my entire world. I no longer felt like a fraud. Getting just that little bit of help and support could improve my recovery so much. Mainly though, it is just the fact that there it is in writing. Someone trusts me and believes what I’m going through. That is enough.