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.

MS and Depression: It’s not all in my head

Technically speaking, I doubled my chances of ‘getting’ depression when I was diagnosed with MS. 50% of people with MS will experience depression at some point, compared to about 20% of non-MSer/’others. The fact my statistics ‘technically’ changed on one day in 2012 reflects how meaningless statistics can be. At times. 50% is a pretty big number. Rarely is there any specific psychological support available for people in the UK through the NHS. You may be able to talk to your MS Nurse if you are lucky and s/he is nice and has time after providing support for the gzillion people on her caseload (shortly to double to 2 gzillion due to cuts. Obv.). Those of you close enough to travel to a MS therapy Centre, (run by volunteers) may be able to access subsidized counselling support. If you are lucky. When we consider this, the lack of awareness about the true nature of depression in MS should perhaps come as no surprise. The idea that it is ‘to be expected’  or par for the course, still seems prevalent. and who can blame people; having MS can really suck.

The thing is, depression is a tricky customer. In my experience of working with people who were clinically depressed there was usually a pretty good reason for it. A normal response to an awful situation. Like MS. Loss. Grief. Fear. Isolation.  How we cope reflects a number of things, including core aspects of our personality, coping strategies we have learned from our family and those around us and the support we have around us to help or hinder. It is informed by our ideas and beliefs about illness.  But still, EVERYONE deals with difficult stuff, right? EVERYONE has stresses and strains? So how can those of us with MS have more than twice the chance of developing depression?

The off-the-peg response is surely: “well, if you had MS you would be depressed too?”. And yes, to a degree this is true. MS can be truly horrible; especially for people with aggressive and progressive MS. It can be disabling, isolating and fill you with fear, anger and dread. It is a life changing diagnosis whatever your prognosis. Fatigue; the most common of MS symptoms can add to the isolation as well as being a symptom of depression in its own right. Health professionals need to start thinking about depression in MS more. Not least because research has shown that depression, not disability or fatigue, is the single most important factor in determining quality of life with people with MS (D’Alisa et al, 2006). Worringly, not only is depression under-diagnosed and as a result, undertreated but most frightening is that many professionals working and managing the care of people with MS don’t seem aware of this research.

When compared to other chronic diseases, depression is reported to be a specific feature of MS. What this means is that while having MS can make you feel depressed, there seems to be something specific about the disease which makes people more likely to be depressed (Even et al, 2004). In reading about this I was surprised (but not surprised) to read that even prior to diagnosis of autoimmune disorders, people reported depressed mood. So, did the person’s low mood occur before there was evidence of an inflammatory process? Was it a coincidence? Or did some sort of inflammatory process cause the mood change? It’s as if the depression acts as some sort of ‘red flag’ for a yet to be diagnosed inflammatory process. This rings true for many people I have spoken to with MS, and with other significant illnesses including cancer.

If we are to assume that health reflects the body being in ‘balance’. The house being in order. Then it is not a big stretch of imagination to think that illness is an imbalance that is reflected in a number of ways. A variety of symptoms; physical and emotional. When we consider that science now recognizes MS reflects an imbalance in the immune system. When we consider that the immune system needs a balance of Th1 (which activate the immune system) and Th2 (which dampen down the immune system) chemicals. When that balance tips, and the immune system becomes predominantly Th1 we have a problem. An inflammatory problem. Like MS.

This is all sounding familiar… It’s reminding me of the information I have read about acid V alkali foods… the impact of what we eat. It reminds me of the more widely understood evidence about the impact of stress levels on cortisol production and how that affects our brain chemistry and physical health. Things start to make sense (while still confusing my ‘Social Scientist’ brain…). Most importantly it makes the case for finding balance in our lives, our diets. In our bodies. It helps us understand why regular exercise is so important and helpful in managing chronic, autoimmune disorders, as well as depression. It reinforces emerging evidence that meditation and mindfulness have beneficial effects for a number of inflammatory disorders and work to reduce inflammation. Most concerning is that it seems that being depressed can actually worsen the physical disease. 

It demonstrates that depression is often part of MS, but that it’s not often understood or managed well. We desperately need to improve our understanding of depression in MS. We need a better response from health care providers than the one currently being offered, or we risk missing an opportunity to improve the lives of people with MS. After all, this is about more than just being a bit sad.

(I recommend Dr Patricia Farrell’s book “It’s not all in your head: anxiety, depression, mood swings & MS” for a good review of research).