I know I blogged about something similar myself a little earlier this week, but I simply have to point you in the direction of this excellent blogpost. It was flagged up as "Post of the Week" by ShiftMS from their Facebook feed today and it's an absolute cracker.
Weaving a Way - "That horrendous neurological disease"
The author is a medical student with MS and she hits the nail right on the head here and I'm going to quote large bits of the post at you here, and I make no apology for that because it is spot on (although, please do go and read the whole thing....)
Apart from type 1 diabetes and SLE the medical school curriculum seems unduly focussed on teaching about MS. Whilst I suppose that makes sense because it is relatively common, they don’t seem to have decided to teach us that it’s a condition (like the others mentioned) which exists on a spectrum of outcomes. Just as they imply that all people with diabetes will eventually go blind and have their feet amputated, all of “those” with MS will be in a wheelchair. Just after my diagnosis I met a local consultant, diagnosed with MS in later life, who told me that for years before diagnosis he had been delivering a lecture entitled “the worst five conditions to get.” Top of his list was MS! Full of hope I asked him whether he had changed his mind but he dashed the hopes by saying “no, it’s bloody terrible.”
In my experience, it remains overwhelmingly true that people who hear I have MS almost always assume that my outcome is dire and that I am certain to die young and in a wheelchair. Maybe I will, but I don't know that any more than you do. It's slightly depressing to hear that this seems to be a view taught at medical schools though.
With the exception of paediatrics, I have had teaching about MS in every speciality we have covered. In my fourth year exams there were questions about MS on three of the four exams. In addition to neurology lectures I have heard about it in lectures about eyes, pregnancy, bladder and bowel, end of life care, lungs, vertigo etc etc. The “finest” example was when someone giving an obstetrics lecture referred to MS as “that horrendous neurological disease.” The upside of this is that it can generally be given as the answer to any question along the lines of “which diseases cause…?”; the downside is that it is a regular reminder of what MIGHT be to come.
Beautiful, huh? Imagine being an MS-sufferer and sitting in a lecture hall to hear your condition described by the professor as 'that horrendous neurological disease". Lovely.
All of this may be irritating to people who are much poorlier than me. Justifiably they can mutter “well what does she know, she hasn’t suffered too badly yet.” And if you read the forums and facebook pages it is obvious that there are people who are unable to stay upbeat, positive and hopeful. I empathise with the vast majority of these but have had to stop reading them due to my rising irritation with those (a minority) who seem to have taken their diagnosis as a reason to take to their beds and give up on life
I'm acutely conscious when I write about my MS that I may come across as excessively stoical. I have some problems, but I also know that, relatively speaking, I'm doing pretty well and I don't like to grumble. In addition, I absolutely hate the idea of letting this condition get the better of me and become an excuse for not doing things. There are lots of MS bloggers who write about nothing but their MS. I know that what someone writes in their blog is not necessarily everything that's going on in your life, but it's tempting to think that there are some people who are defining their lives by their condition. Fuck that.
But how positive can you really be? Then again, if you take that view, how positive can anyone be? Who knows what's coming next? That's true for everyone else in the world too, regardless of whether or not they suffer from a currently incurable neurological condition.... but at the same time, y'know... I sit in the waiting room at the neurologist every year, and I see the people waiting with me.
So I want to shout “look at me, it isn’t necessarily completely shit” but I don’t because, of course, it is still early days and there are significant challenges to overcome....
I know what she mean, but for myself, I'm inclined to be a little more positive. Live in the now, for goodness sake. Tomorrow we die. Today we live.
Great post though. Hat tip.
Six by Nico: Best of 2018
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