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“That horrendous neurological disease”

The holiday is sadly a distant memory, I’ve been back at the medical school two weeks and already am reminded, once again, that it is not a great place to be an “ill” person. Quite apart from the placement I am doing (which began with three days of standing up) and my new policy of non-disclosure (or more accurately not feeling the need to tell every new member of staff I work with – still trying to find the balance between being allowed to sit down and being treated like I am just about to break) every week someone tells us how horrendous it is to have MS.

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.” Thinking back to that conversation after 18 months I suspect he was in the middle of his grieving process – he was no longer able to use his hands to do the delicate yet macho procedures on which his self-image was probably largely established, he had experienced optic neuritis which I haven’t but imagine must be absolutely terrifying, and he worked in an environment which supported his own view that MS was the most dreadful of all diseases.

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. When I hear that I am bound to become wheelchair bound, incontinent, unable to eat or drink and end up dying because I can’t swallow my own saliva I find it difficult to know how to arrange my face. I am conscious that a fair proportion of the student body suddenly feel awkward or curious to see how I react – unsure whether to believe what they are being told at the front, or what they see in front of them. Because, of course, what we are taught as being likely is not at all inevitable.

The MS Society figures tell us that the majority of MS “sufferers” do not use a wheelchair. I read a report that told me that fifty percent of those diagnosed with MS had given up full-time work within five years BUT that means that fifty percent haven’t (I hanker after working four days a week but that’s not because of the MS, it’s because then I could get my washing done and go out for coffee etc etc.) Whilst I personally know people with MS who are poorly with it, I also know of people who have been well for decades. Indeed my neurologist (and neurologists don’t tend to share the doom-laden view of the other doctors) told me that 1% of people he diagnoses NEVER have another relapse. Now that wasn’t the case for me, but still I refuse to accept the idea that serious disability is my only destiny. I tell myself that many of these doctors were trained when the treatments just weren’t as good as they are now. When I was deciding whether to start the Copaxone  (going well by the way although they still sting like hell) I read story after story of people who were relapse free for years after starting it. For me, who was having a relapse roughly every five months and was at the time struggling to recover from the last one, this was all I needed to hear to convince me that this was going to keep me well.

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. Whenever anyone posts anything positive or hopeful they are there ready to tell them they are doomed and that all hope is to be abandoned because they will be unemployed/divorced/friendless/incapable within months. It would be unfair to say that everyone who is ill with MS reacts like this because there are plenty of people on the forums who, despite significant disability and difficulties, are always ready to offer sensible advice and wisdom based on their experience, yet the minority still make diagnosis even more terrifying than it is.

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 – not least in the next year. With fingers crossed that I am relapse free until after finals (if the copaxone isn’t working then I am due one, based on the previous pattern, this coming autumn), and that I pass the blasted things, this time next year will find me trying to work as a junior doctor – a job that another doctor described this week as the “worst f***ing year of your life.” Perhaps it is just in some people’s nature to be less than positive…


7 thoughts on ““That horrendous neurological disease”

  1. As a (probable) sufferer of SLE this goes someway to explain why my gp knows nothing useful and my consultants tell me nothing at all!

  2. When I was awaiting diagnosis I saw several gps – one of them told me I couldn’t possibly have ms because I’d run a marathon 4 months earlier and ” you can’t run if you have ms”, another gp said I probably had a trapped nerve, or, “worst case scenario….ms” . Just goes to show how variable this disease is and little is known by those we put our trust in.

  3. I am so pleased to have read this post. I have relapsing remitting MS and I live life to the full. I rock climb, study hard, I am ambitious and overall I am happy most of the time. Apparently I am just unusual and therefore I can’t possibly understand what MS is really like. Love the post!

  4. I am a naturally optimistic person, so I have ideas of what I want to achieve, I have goals I work towards. What do you do if you need a bit of extra help but your husband is a miserable bastard who sees your disability before he sees you? Who wraps you up in barbed wire to protect you from doing too much thus tiring yourself out? Who wants your existence to continue as long as possible but who sees the only way of ensuring that is to make your existence as grey and bland as possible? I end up so exhausted from fighting for the opportunity to just try something that I achieve nothing. I have learnt helplessness now. That seems to be my life.

    But I still have ambitions. I am trying to study – OU – but he is there, interrupting, not helping, telling me it is pointless. It is hard to keep my pecker up. I only have so much energy and it gets used up so fast.

    Sorry I got on a bit of a downer there. I know you are right and I am more able than I am allowed to be. What can I do?

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