living with the invisible diagnosis

I have waited a long time to write about this. The reasons for that wait will probably become clear as I write. In part, it is because I have never (and still do not) feel as if I can articulate the issue as clearly as I would want. It is also perhaps, because I have read many other comments on this and I hate to be repetitive. I am hoping, as always, to generate thought about this and extend a hand to anyone who may have had the same experience as me.

So MS is often invisible. We know that, right? The symptoms are for many of us, particular with relapsing remitting MS, just not obvious. To enable others to ‘see’ them you have to report them. Describe them. Here’s the first issue. How do you describe them without falling back on the descriptors you have read? How do you find the words to describe a feeling or sensation that to begin with is so alien to you that you seriously think you may be imagining it. That makes you question your own sanity.

In describing it you label it. You make it real. The tricky bit is that you can’t report every tingle or sensation. Neither can you always remember to tell people when the symptom has gone away…(“oh sorry, that burning sensation stopped a week ago. Did I forget to tell you…oops! Sorry…”). And if, like me, you hate sounding like a whinger. A moaner. And you are determined your life will not become about reporting every sensation and terrain that MS takes you on. And please, dear reader do not think I am a martyr. I’m no saint. Of course, one needs to be able to disclose and discuss in order to access support. That is hugely important.

But when your body; your brain, starts to do weird things, I’m sorry but unless you say it out loud to someone you will. Slowly. Go. Mad. And so, you have to find a middle ground. I vividly remember sobbing “I do not want to be an ill person!” during my diagnosis. Later I thought – “well they may have given this a name, but perhaps I have to accept a certain level as ‘normal’ and just speak up when I’m worried…”. Some things are better left unsaid.

I have talked on this blog before about the diagnostic process and the way in which it is often managed. Clumsily. Lengthy. Without adequate support. Of course, it is often also very well supported and managed, but that is not the case for many. When I first presented I was seen as a ’hysterical woman’ (not the first time I have been called this, granted 😉 but given the nature of my symptoms it was a little ridiculous. A prolific non-attender at the GP, I rocked up with classic tingling and numbness down my right side. With supplementary symptoms over the preceding few months. “I can’t but help notice you’re upset” said the GP. “Is there anything *else* going on?”.

“umm. What aside from this stroke/brain tumour/motor neurone disease/cancer (*delete as appropriate for the thought you had) I replied. I was shocked. “is there anything else going on??”…I thought…I even racked my brains for ummm…I don’t know, a gzillionth of a second. Urgh! (my second visit I could tell the Gp was skulking about for incriminating evidence of a Conversion Disorder… pah!)

So is it any wonder I have since been left feeling as if people do not believe my symptoms. There. I’ve said it. I often feel as if I have to *prove* my diagnosis. Even to my nearest and dearest. And given my desire not to constantly describe whatever symptoms I am experiencing, or talk about MS *too* much, this creates a tension. A conflict. You may know it? It’s a bit like doing the odd cough just to show your boss you really did have a cold when you were off sick…that one.

Perhaps this reflects the process of ‘acceptance’, though I’m not sure how. Furthermore, as I feel the benefits 2 years down the line of major dietary and lifestyle changes, my symptoms become less and less and when people see how well I am, I am catapulted back to that thought: they don’t believe I was diagnosed with MS.

Perhaps it doesn’t really matter what other people think. Perhaps that’s the lesson I am supposed to learn.