It is over 30yrs since I started having symptoms of MS and I was dismissed by the doctors and family alike as making it up for some strange reason that I never worked out why I would have been. What stuns me more than anything I hear from others is that this type of treatment is still happening, and there are still people out there who know they are ill, but no one else does. I remember quite clearly the pain that I felt every time I went to see a doctor and I was sent away with that look that I saw again and again, the look of ‘she is wasting my time, there is nothing wrong here’. I know there are some people who do fain illness to get attention, but when someone is clearly in pain and returns every few months with the exact same symptoms and the the exact same plea for help, surly that tells a doctor there is really something wrong. The Doctors did see me for months and I would suddenly appear again and again I had the same problems, it wasn’t like I was there every few days or that I kept changing what was wrong with me, so why I got treated in that manner, I have never understood, other than I can’t help wondering if one doctor wrote it on my file and it triggered all the others.
I was lucky I moved around the country a lot and my real stroke of luck was when I moved to Glasgow as my notes for the 3rd time in my life were lost. This time I because I didn’t have a small child I never saw my doctor, unless I was ill and my face wasn’t frequently sat in their waiting room for jabs and weighings of baby and so on. When I did go for the third time in a couple of years and I insisted on that visit that something was done my GP listened. Once I had my diagnosis my GP said something to me that I have never forgotten and I think could be at the root of many people not being diagnosed. He was totally up front with me and said that ‘he had never had a patient with MS so we were learning together’. GP’s are great, but if they don’t deal with an illness regularly how are they meant to recognise them? I left there wondering how much of a problem this was as the specialist who also found my MS, said he had only come across one other patient in his entire career who also had MS, he was and ENT specialist in his 60’s, he sent me for an MRI as he didn’t know what was wrong either, and found the lesions.
Within one year I had two Doctors tell me they knew almost nothing about MS, so it really isn’t that surprising that there are people out there ill and undiagnosed with an array of conditions. Out of all the NHS people that I had been seen by in the past and saw in the next year only one said sorry. I had had bladder problems for years and I had to learn how to use a catheter, it was the Sister in charge of the urology ward. She asked my history with MS and I told her briefly what had happened over the years. She turned to me and asked if anyone had ever apologised to me, they hadn’t, she then did and her words were that she was apologising on behalf of the entire NHS as they had let me down.
I can’t help but wonder how many people there out there at this very second with conditions that are destroying them, without diagnosis or support, who are being daily made to feel they are mad or a nuisances, simply because those treating them don’t know anything about the condition that is making them ill. I know that not everyone can know everything, but surely there should be some kind of safety net, a battery of test that could be done when everything else has failed to find the cause. If I had just been given an MRI years before I was, I wouldn’t have been forced to go through all of what I did without anything stronger than an aspirin to deal with spasms and constant pain. I am in no doubt there are a million plus me’s out there right now, and I am sorry you aren’t getting the help you deserve and need.