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Being the expert of your disability/condition

  • Posted by Elizabeth McClung
  • 30 Mar 08, 9:10 AM

When I was in the ER last week, the heart and autonomic specialist told me something important: there was what he COULD tell me about my condition, and there was what ONLY I, through trial and error (or the experiences of living the disability) would know about my condition. Or to put another way, while a doctor or even a specialist might be knowledgeable about a disease or disability, even YOUR specific clinical condition, they will never be as expert as you in the conditions of your life. Why? Because the manifestations of the ways the body, much like humans, seem all a little different, a little unique.

I have found that the specialists I trust are the ones who are always ready to be amazed. They don’t need to wait until conference papers PROVE there are four types of MS, or that there are still cases that don’t fit into those models of MS. The ones I distrust are ones who, without even hearing me out, already assume that they are the holder of all knowledge and that my sentient awareness is secondary to the battery of tests they are going to order. I am thinking of one specialist who is ordering my test for orthostatic hypotension. She is doing this AFTER four other specialists and three GP have PROVED I have orthostatic hypotension (one even made a graph with times and blood pressure readings). She's doing it even after she tested me herself and put in her official report that I have orthostatic hypotension. Yet, due to my autonomic system failure, the orthostatic hypotension can’t be treated…..but she is determined.

I sat and asked my neurological specialist two questions (and recorded the answers): 1) When do you expect to finish your diagnostic testing? Answer: Two additional years (beyond the 14 months so far). And 2) When do you expect to begin treatment? Answer: There IS no treatment.

Now, while my story seems a bit down the rabbit hole with Alice in Wonderland, there is a point. I have, in just the last year seen many friends diagnosed definitively with diseases, usually neuro ones, and then, sometimes months, but sometimes YEARS later, been told, just as definitively, “No, you don’t have THAT condition.” On the site Patients Like Me, people often put their diagnosis’ next to the years which they received them. So it is 1999-2003 – MS; 2003-2005 Parkinson’s; 2005-2007 autoimmune neuropothy; 2008 – unknown. Many doctors refer to patients negatively as “googlers” and see no point in groups like Patients Like Me. They see them as places which only encourage people to exaggerate symptoms and ignore the REAL knowledge: the doctors.

I joined Patients Like Me after 9 months of specialists and doctors where I was only told what I did NOT have, and that they not I, would determine what was or was not important. During the summer ambulances took me to hospital about every three weeks due to heat intolerance. Yet no doctor or specialist cared about the heat intolerance. I did not have MS, therefore, heat intolerance was some inexplicable condition (perhaps one induced by the typical hysterics of a female?) and of no diagnostic interest. Except it completely dominated my quality of life. And by joining Patients Like Me I could find what no doctor had said; that I was not alone. That other people had symptoms like mine. And maybe they didn’t exactly match and maybe we didn’t have the same condition but they existed; they knew what extreme heat intolerance (or other symptoms) felt like; what effect they had on lives. The one thing my doctors didn’t seem to want to know.

Finally, I found a GP who said, “Treatment of chronic conditions is a partnership between patient and doctor and has been for a couple decades. Sadly many of my colleagues don’t seem aware of that.” When I bring in medical journals or point out issues that have effect in my daily living, he thanks me. He tries to find medications to help me where I am, but his greatest frustration is his need for the assistance of specialists, some of which are off on their grail hunt. One such neurologist, who will not return his calls nor those of a consulting neurologist for months, continues in her belief that her initial “20 minute assessment” must be correct. And as MRI’s, the nerve conduction tests, blood-work, and even tests she does with her own hands, show dying neural systems, she continues to explain them away like the statement. “Many healthy people have dropsy in the face.” She orders more tests, and reorders the tests after seeing results (that my spine AND all limbs are demyelinating) for one reason: On first seeing me, she said “there is nothing medically wrong with your neural network.” On and on….until I ended in the ER.

And there, assessed by this expert, who simply looked at me and my oxy saturation and heart monitor and talked to me about what I knew, from my GP, to other specialists. And after explaining that ER specialists do not START long term follow-up treatment, he did just that, in order to improve my quality of life. Because no one else had, in their diagnostic obsession, when they should have months ago.

While this is my story, I am sure that other people can relate to aspects of it. And so, I want to repeat the ER specialist’s message. He told me I was the expert of MY condition and I needed to know that because it was through trial and error (as well as often demanding this or that treatment) that I would find the way to best preserve my quality of life. So, yes, sometimes the occupational therapist, the physical therapist, the doctor or the specialist IS NOT LISTENING. And they hold you up to a statistic they learned X years ago and then tell you how you SHOULD be, from what activity level you ‘should’ be at or working towards to what symptoms or pain levels you ‘should’ be displaying. Hearing that is frustrating and demoralizing and has reduced me to tears.

But unless they can improve my quality of life, what use are they? And how will they do that unless they start listening?

I wrote this because I did not want someone else to feel what I felt for most of a year: alone. I ask that if you can relate, please share your story too, so that others can identify with it as well.

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Having any condition can be lonely until you meet others who understand. My blog is an expample of how to contact others world wide when you are one of a group who are never understood eg cannot eat or drink..yes that is right cannot eat or drink....and NO I am NOT making it up...oh and by the way its CANNOT eat not wont! huge difference! Thanks and perhaps you will read my blog now too! ......umm I wonder and await your comments and questions there for me with huge interest!

  • 2.
  • At 11:43 AM on 01 Apr 2008, fiona catherine wrote:

I am partially deaf due to a mild head crash 1989 and am wanting to talk online to others of the same views.Born with unique chrosomonsal disorder possibly shown through a mild speech impairment I am survivng changes in my school placement which I find hard also wondering about some sort of sheltered accomodation in Glasgow Could you please help me

  • 3.
  • At 03:26 AM on 03 Apr 2008, David Gillon wrote:

I've long felt the doctor-patient balance needs re-addressing. After all, they're basically mechanics for the body and if a mechanic acted the way some doctors do the politest response they'd get would be 'You're fired!'

My favourite 'not listening' anecdote was a rheumatologist who asked if I used any walking aids - this barely a minute after I had walked along the corridor to meet him using crutches and then shaken hands with crutch waving dangerously around his kneecaps.

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