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Physician, heal thyself!

16 August 2015

The months leading up to the diagnosis of MS are difficult for most of us.  But when a physician’s body fails them, there's an additional, subtle layer of angst to deal with.  Doctors don't get sick.  And when we do, it is uncomfortable for everyone involved.  To witness another doctor proving to be a mere mortal forces those caring for them to confront their own frailty. And how do you deal with a physician / patient?  One who possibly has more years of formal education than many of those who are treating them - but one who is scared and unwell, and who perhaps knows less than you might think about the particular affliction they are experiencing.  It's not always easy to move seamlessly between my roles as "specialist" one day and "patient" the next - and it's not every provider who is comfortable being the doctor when it's me sitting in the other chair in their office!

The days after an MS diagnosis are hard, too.  Some of you are busy getting through them right now, I know, and I hope it helps to hear that I found getting my head around having MS completely overwhelming, too.  It didn't help having my own medical degree at all.  That just added a layer of "shame" that made me unable to discuss what was going on with most of my work friends.  Physician, heal thyself!  But, as in most difficult situations, support came from some unexpected places.

When I look back from where I am today, there were actually a whole lot of “silver linings” to that difficult time.  The day I had my lumbar puncture followed by my first dose of IV steroids, I had caught public transport in to the hospital – having not yet learned my lesson about just how difficult that can be! Before the infusion had finished, my boss appeared at my bedside and announced “I’m here to drive you home”.  Then the nurse who came to give me the rest of the IV steroids at home turned out to be an absolute delight – sharing a cup of tea and cheerful conversation daily and leaving me smiling at the end of each visit. Despite how few people I had confided in about what was going on, home cooked meals appeared, uplifting email messages arrived from around the world, and my busy clinics were somehow rearranged so that I could take the necessary time off work and return to find things under control.  All the small, practical expressions of support added up beautifully.

A wise friend who has lived with MS for many years longer than I have has told me more than once that an essential “tool” for living well with MS is having the right support structures in place.  The right team of professionals who you trust to help you optimize your health and function.  The right phone numbers to call when you’re struggling. The right companion animal to comfort you, if that’s your thing.  And the right collection of family and friends who will accept you as you are and be there for you when you need them. The sort of people you try to be there for, too - the best support networks carry two-way traffic!

I’ve always been an independent person.  A carer rather than someone who is comfortable accepting care from others.  It’s been humbling at times to discover how many lovely people there are around me, just waiting for me to take down the “one way” signs and allow them to be part of my support team as I move through life with MS. The stranger who showed me that doctors do get MS (and that this is OK) was perhaps the most unexpected outstretched hand to appear in my life so far – but that’s a story for next time! 

 

The Unaffected One

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Comments (6)

Hello TUO. Thank you for such a frank and honest assessment of medicine's helplessness in the face of this wretched disease. There's no shame in it. It has bewildered and confounded for over a hundred years since Charcot first described it. We have an industrial model of medicine in this country. Prescribe or refer, next patient, prescribe or refer, next patient - but as you have found, there is nothing so therapeutic as small acts of kindness and support, and time and care, and sometimes just simply being present with warmth for someone in need. It's enlightening to see how a doctor sometimes responds to their own illness by embracing different medical models. a few who spring to mind are Dr Chris O'Brien and his fully integrated cancer hospital 'Lifehouse', and George Jelinek and Terry Wahls (two doctors with MS) who noted the failure of mainstream medicine and embraced lifestyle modification and mind/body medicine instead. You mention being humbled sometimes. There's very little to be grateful for in having MS, TUO, but having a chronic illness certainly opens ones eyes in many ways, and in medicine, I think a little humility can be profoundly and positively transformative for all concerned! Hippocrates is quoted as saying "If you are not your own doctor, you are a fool." I think this is particularly true of MS, and I think you have a head start on most of us there! I appreciated this post, and I'm looking forward to that 'story for next time'...

Thank you very much for all that, Lawrie - and for you continued thoughtful input into this platform! The feeling of "shame" I had when first diagnosed with MS was one that took me by surprise. I agree with you 100% that it was an unnecessary / inappropriate feeling - but the sense of somehow having "failed" by becoming ill was a very real one for me for quite some time. Not something I feel these days, thank goodness, as it was not comfortable while it lasted! I'll be back soon with the promised story - it's all written but was too long to include in one blog with this. Meanwhile, can I recommend another wonderful, holistic doctor / writer you might perhaps enjoy reading? Rachel Naomi Remen is the author of two simply beautiful books, the first of which was given to me when I was newly diagnosed - by a GP friend who realised it would help when I didn't even understand what I was feeling! "Kitchen Table Wisdom" is the book. It's pretty amazing. Mainly stories about patients with terminal illnesses, but somehow incredibly uplifting. The author is a truly inspiring woman - and also a doctor who has lived most of her life with a chronic, unpredictable disease. I think of her wisdom often when I see patients as well as when I face my own hurdles. Highly recommended!

Thanks for the tip TUO - will look into that author for sure. BTW, of all the medical specialties, I think that biochemistry and your own specialty are the two that have the most to add to the understanding of this illness. Lifestyle and mind/body approaches are all important, but only because the disease is still mysterious (I'm thinking about medical approaches to stomach ulcers before the discovery of H. pylori). Gee, your post has brought up so many things I would like to explore further. Thanks again!

Oh good - questions make good fodder for future posts! I hope you enjoy Dr Remen's writing. I shed a few tears reading her book, but they were good ones. She tells stories. The reader is not "instructed" on what the stories are supposed to mean, but somehow I came away from each hour spent with her writing having new insights and outlooks on life. I have since given the book to others, so I would aporeciate any feedback on how you find it. I don't THINK I'd be unusual in loving her writing!

Thanks for that, Rebecca - and thanks for reading. It's really nice "airing" my thoughts as I look back on some of my experiences with MS so far, knowing that people here are likely to relate!