This time last week I was waiting for an ambulance to take me to the hospital. Completely un MS-related the general consensus was that I had appendicitis. It was all quite inconvenient because Mr C was away and I had plans. In the spirit of someone who has given birth without drugs (not by choice) I had already taken my children on their first demonstration, ferried them around to parties and Wagamamas AND “hosted” a Strictly party in a fair amount of pain before finally giving in and getting myself seen to, and thus learning about medicine from the patient’s perspective.
Not that I haven’t been a “patient” before of course. And the whole experience reminded me of the big fear I had when I was first ill – the fear of being “medically unexplained.” For those of you not familiar with this term, it is the label given to people whose pain and symptoms are not explainable by current medical testing or understanding. It is the name sometimes given to conditions like ME, fibromyalgia, IBS – conditions that doctors can’t explain scientifically, and some doctors don’t even accept as real. “Medically unexplained” is used by some as shorthand for “possibly all in their head.” My biggest fear before my MRI results was a diagnosis of ME because, however much more seriously it is taken now than twenty years ago, it still comes attached with a lot of assumptions about the type of person who gets a condition like ME and thus how they are treated by the medical establishment and wider society. And I didn’t want people making those assumptions about me – if there’s one thing I like, its being taken seriously!
I may have mentioned that my neurologist is eccentric to say the least – kind, very patient with my repeated (and denied) requests for modafinil, straight-talking and off-the-wall. One comment from my “diagnosis” appointment with him was him telling me “twenty years ago we would have said your symptoms are caused by you being an hysterical woman … now we can use MRI to see there is actually something real wrong with you.” So I can be grateful for the white patches in my brain! A quick peek at the MS fora reveals hundreds of people in what they call “limbo-land” – symptomatic but waiting for a definite diagnosis, either because they have only had one relapse (you need two really for a MS label) or because their MRI doesn’t show the characteristic changes. This uncertainty must be frustrating, frightening and above all, difficult to explain to those around them and therefore for them to get the support and empathy they need. The initials MS mean that I don’t really ever have to explain further why I am struggling to walk some days, or why I am sometimes too tired to go out with friends. Without the label I would have to waste time worrying that people might think that what I have isn’t something “real.”
And that’s the worry that came back last week as the doctors argued whether it was my appendix (all the physical symptoms but normal blood tests), or ovaries, or something else. In the end the pain subsided and after a couple of days I was home again and back to normal (with a doctor’s warning that my appendix is likely to play up again soon and THEN they will take it out – here’s hoping its not Christmas day.) Three separate medical people have since told me that up to 40% of people admitted into hospital with pains like mine are “medically unexplained” and that most of those are assumed to be “women who are a bit needy.” This is taught as fact to medical students and junior doctors by the type of doctors who are only really interested if there is something to cut out. And undoubtedly that may be true of some – children feel emotional upset in their tunnies, why wouldn’t adults? But being on the receiving end of that assumption is horrendous. I could have told them that I was generally feeling physically better than I have for two years (hurray for Copaxone), that I feel relatively positive about the exams, am excited about qualifying and loving life outside of work so therefore could they please just stop fobbing me off, fix whatever it was and let me get home for the spaghetti putanesca I was dreaming off whilst they had kept me nil-by-mouth for 48 hours? I didn’t tell them any of this because frankly they wouldn’t have cared and because I have the rather infuriating habit of bursting into tears whenever I get fired up, thus completely undermining my own credibility. So I came home, apologised to all the fab people who helped with the children and getting my husband home, made the spaghetti putanesca, and spared an extra thought for all of those who suffer pain and disability daily and who don’t have an answer as to why. Because with an explanation comes hope of a cure, or at least the chance to slow progression or live more easily with the symptoms.
PS A number of people have asked me this week what I thought of the Jack Osbourne appeal for the MS Society on BBC1 last Sunday. My general view is that if you were a newly-diagnosed person or family member of such it would have been absolutely terrifying to watch because it highlighted how shit it all could be. But I suppose that’s the point of an appeal – the MS Society and MS Trust provide so much in the way of support, education and medical research that every donation helps each one of us every day. In the light of that perhaps your Christmas list could include one of these.