They say the MS is unique to every sufferer, but from very early on in my writings I have had people continually saying to me that I am writing their story, that it felt as though I was describing the things they couldn’t put in to words, not just for MS but for many other conditions. I think that is the biggest thing I have learned, I am not as alone as I once thought I was. Spend your life amongst people who are able bodied and fit, it is very easy to start feeling as though you are some kind of freak or that no one can ever understand because we have this unique illness, designed by our bodies, for our bodies. If I could get doctors and writers to do one thing I would ask them to stop telling new sufferers that they can’t tell them what will happen as no two people are the same, and therefore tell us nothing at all. I knew they couldn’t give me a calendar with milestones for each symptoms on the date they would happen, but I wanted something, some idea even if it wasn’t totally clear as to what I and they could expect in time. There is now one fact that is clear to me, my illness isn’t unique, bespoke, yes, but not unique. I may not feel something in an identical way to the next, but we do have the same symptom, how we experience it is down to us. I could make the same comment in regard to the common cold, but my headache won’t be identical to yours, as pain is bespoke to the person, but no one ever says that a cold is a unique condition.
If you head home from seeing a doctor with this impression that you are some how on your own, it makes adjusting so much harder. I was 10yrs plus from diagnosis before I started to write and I found more and more people who are identically unique to me. An MS hug is still an MS hug, regardless if you feel it as low as your pelvis or as high as your neck, it still exists, I didn’t know that when I had my first one, I thought I was dieing as no one told me this Hug thing even existed. No one told me a limb could die and come back, or of any symptom that I didn’t have at the point of diagnosis, I was under the oh so wrong impression that I had the full array of symptoms that I would ever have, and all that would happen was they would get worse.
So I want to say it right here and right now, no illness is unique, there is someone out there who is going through exactly what you are right now, and here is the other strange bit, many of them won’t even have the same condition as you. I often wonder if it might not be more helpful to a patient if they were yes told what condition they have, but for true support and understanding that throwing that label away is probably the best thing you can do. If you have brain fog, it doesn’t matter if it is caused by MS, Fibor or Parkinson’s, we all have brain fog and we all get the same symptoms with slight twists, but the same. Every symptom I have, I have found someone else with, some had the label or Lupus other Lymes and many with conditions I had never heard of before, but we were all going through the same thing. Chronic illness regardless of which flavour you are talking about, throws up the same problems, the same fears and all to often the same symptoms, may be it is the umbrella of chronic illness, that we should all gather and there supply the support and knowledge that our doctors are all to reluctant to discuss. Many who know me from twitter will know that I have already moved away from saying I have MS as much as I used to, well now you know the reason. If all those support groups and charities out there now set up to help each title were to pool their knowledge and resources, I can’t help think that they too would be able to do so much more. All of us pulling together on all the things that we share and we have individually found solutions or assistance, seem to me to make far more sense, than us all saying continually, we are unique, no one understands. Well we do understand more than many might like to think.