Receiving your MS diagnosis has to rank up there as one of the suckiest things imaginable. For most of us it is about sheer uncertainty that follows the words, “You have Multiple Sclerosis”. You may have known it was coming but you didn’t really expect it. To win the Really Bad Luck Lottery.
One moment you are wondering what is wrong with you and the next you are thrust into a mental washing machine of terrifying thoughts and emotions. What does it mean? What will happen? When will it happen? How bad will it be? Can I take it? What if I can’t? What about my relationships? What about my ability to support myself? Will I need a wheelchair? And so on. For the rest of your life there are never-ending variations of worrying about the what-ifs. It is very dull.
I have broken several bones in my life and each time I have been given an accurate prognosis based on the type of break, the fix, and my engagement with the rehab. It isn’t perfect, but it has rarely been inaccurate. Either way, there seems to be a certain clarity that neither I nor any of the people I know with MS have ever been fortunate enough to receive. If you bust a bone the orthopaedic doctor replies in a way that answers the broken-bone equivalent of some of the questions in paragraph one. However loosely. A relationship with the Orthopaedic Surgeon is a time-limited experience. They fix it, dispense rehab advice, and move on. We have both had a forced relationship that we could both end.
However, the standout feature of having a chronic condition that won’t kill you is the nature of your relationship with healthcare professionals and the healthcare system. It is entirely different. From the day of diagnosis you are forced into a long-term relationship – whether you like it or not – where your new partner is usually dictated by the geography of your local hospital.
Digest that for a moment; your new long-term partner is a function of where you live. Where. You. Live.
An MS diagnosis makes us the victim of a forced marriage – not arranged – where we never even got to meet the other half first.
One of the issues with MS is that you don’t die from it, you die with it and that fact seems somehow to make it less serious in the eyes of many. That is wrong, as anyone with MS will tell you. It is sad to say, but there have been odd occasions where death has seemed momentarily preferable to the MS. That is how much it sucks to have MS.
This unconscious downgrading of the seriousness seems to underpin a perennial confusion held by many of those treating our MS or having to deal with our MS. It is between understanding how MS feels and how it actually feels to have MS.
Talking of feelings, nothing is more frustrating than not knowing if something is within your control. I have never ever met a patient that hasn’t wanted to intervene in some way in an attempt to control their newfound forever friend. We cast around, instantly becoming less risk-averse, read everything we can find, hear all the input from people ‘just trying to help’, and become far more suggestible to woo. After all, who doesn’t want a magic cure? I certainly do.
More than once in my 27y of MS, I have woken up feeling like I have never slept, or there is a new unexplained buzzing in my ears or pain somewhere. Is it MS? Everything now runs through the ‘is it MS’ filter. It is natural to seek an explanation for these new weird episodes in your life and who seems the most likely person to do this?
Why, it’s your new partner, the neurologist. That’s who. That incredibly learned person that you were forcibly married to at the point of diagnosis. And because we are now in a long-term relationship I want them to understand a bit about me; my hopes, dreams, aspirations, fears and so forth,. I expect them to shed a bit of light on what is going on, and I want the them to ask me how far I am willing to go, and offer me treatment based on my risk tolerance, not on their risk tolerance. It is me who has to live with it day to day, not them.
So, as my new partner, I expect quite a bit. Additionally, of this magic needs to happen in twenty-minute segments once a year. Perhaps unrealistically, but there you go, most long-term relationships have unrealistic expectations in them. Mine are clouded with genuine fear and worry because that is what MS does to you. I am not always the rational one any more.
In a rational world, I would like to think that my neurologist understands my frustrations, my fears, my uncertainty, my attitude to risk etc that I am feeling, but it doesn’t feel that way. Whilst medical school these days emphasises the patient more than it ever did, it still doesn’t cover forced long-term relationships. I get that it is a tricky balance as I realise us patients can be tricky buggers, over-egging things, being hypochondriacs, dangerous know-it-all’s educated by Dr Google and so on. It would be great to think that nestled in the vast amount of schooling that they have received the topic of long-term relationships with patients who don’t die quickly but get sicker and deteriorate over time is included. So far, I am not aware of any relevant training prior to being forced into a relationship with us. Awks for them as well, but then they don’t have MS. The fact remains that in choosing Neurology they have entered a field where they too are forcibly wed to patients by the vagaries of geography.
In a quest for answers and a bit of certainty, MS patients will also look to their doctors for emotional as much as purely medical help. All doctors will have heard variations on the question, ‘What would you do in my shoes, doc?’. Usually, they swerve them neatly as I am pretty sure this is a scenario covered off in ‘Being A Doctor 101′. To pass that beginners module they soon learn to cleverly redirect it, refuse to answer it etc but they rarely say, ‘I don’t really know the answer, but let me go and find out and I’ll get back to you’. That is because many still exist in a hierarchical world where that is simply an unacceptable ceding of control and a display of weakness.
We are not trying to wrestle the intellectual high ground from them, say ‘ha’, or gloat over something we know and they don’t. We are scared and worried about the future and have been thrust into an unplanned long-term relationship with them, and we look to them as the font of all knowledge. However unfair that may seem.
We would very much like to be treated more as an equal and not an annual inconvenience where our partner half fixes a smile, says how lovely it is to see us again, asks after the interest of ours they may remember about, makes understanding cooing noises, pokes and prods us for a bit and then come off as the font of all knowledge with everything to do with us and our condition.
“See you in twelve months; send in the next patient.”
We want more from this relationship. It can’t be transactional, we all need to be all-in, all the time.