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.

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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).

For my children…

I was asked to write a guest post (re-blogged below) for the lovely www.stumblinginflats.com. Do take at look at her site. She connects with many other MS bloggers/survivors and is keen to network with others. Thanks to her for the guest blog opportunity. I decided to write about something that is a little unspoken for many of us mums whose lives have been touched by MS.

 

Anyone who has been diagnosed with MS knows this is big. The implications of your diagnosis for your children are huge, though in many respects are as yet unknown. Like so much about this condition, you are left with a cloud of uncertainty under which you must continue to raise your precious loves.  Like me I am sure many of you read the information and depending on what and where you read it, it will mean different things. At the very least your kids are a lot more likely to get MS than a kid whose parent doesn’t have MS. 20 -40 times more likely than someone who doesn’t have a parent with MS. Shit.  

I had unknowingly passed on my blue eyes, a love of musicals and a genetic vulnerability to MS.

 I spent a lot of time feeling guilty about this. When I didn’t feel guilty I felt terrified. Then sad. Then a bit angry. Then sad. You get the idea… What I have learned this year though, and New Year seems a good time to reflect, is that remaining in the sad/angry/guilty ‘fug’ was not going to help my kids.

So. I began to think how I would want them to respond to their MS if it did become a reality for them. Just thinking like that was a pretty painful process, as you can imagine. But once I started it became quite clear.

Their response to it would undoubtedly be informed by their mother’s response to it. By the extent to which they saw their mother fight for her health. By the extent to which they saw MS dictate to her what she could and could not do. By how strong she was. I would want them to think “well, it never stopped Mum doing anything” and then bugger off and climb Kilimanjaro or something equally wonderful and exciting. Because that is what I want for my kids. The same as any other parent. I want their life to be wonderful, adventurous and exciting. Happy and healthy. Full of love.  I want them to be able to ‘dare greatly’ because they feel strong and fearless. Because they know they are loved.

For them to do this, I need to live my life fearlessly. I need to be strong, happy and to love them and my life fully in spite of its challenges. I can make a practical impact on their views about food, what they eat, if they exercise and how they can live an optimally healthy life. Above all though, I do not want them to feel afraid if MS comes into their life. Into their brain. When I began to think in this way I was flooded with a new energy to face the future. It all began to seem quite simple. I am doing it all, for them.

 

The way I see it…

As a psychologist I am fascinated by people’s behaviour. Their thoughts, feelings and behaviour. The way in which they experience the world, or respond to it. Being diagnosed with MS I found myself playing a central role in a play I had been reading about for many years. I am learning all the time and piecing together the puzzle. Remembering things I knew. Rediscovering information I once learned. Really understanding information I thought I understood…but viewing it from a new position gives it a different depth and urgency.  A new clarity. It is proving helpful to me in my recovery and in my work and I want to share it with you.

Having researched the psychology of health in the past the concept of individual’s Illness Perceptions is not new to me. Nor is the concept new to social scientists. In many ways it is the science to explain common-sense processes that many of us are aware of. The idiosyncratic way we respond to health ‘threats’. In general, our illness perceptions emerge out of our beliefs about illness and what illness means for us in the context of our lives. So that’s no surprise, right? What is significant though is how they seem to play a role in health outcomes and recovery.

In Current Directions in Psychological Science (Feb 2012) Petrie (University of Auckland) and Weinman (Institute of Psychiatry, King’s College London) reviewed the extensive evidence regarding this and demonstrated that people’s illness perceptions bear a direct relationship  to important health outcomes, including the individual’s level of functioning and ability, health care use, treatment adherence and even *gulp* overall mortality (http://cdp.sagepub.com/content/21/1/60.short).

How this occurs is what is interesting. What seems to happen is that when faced with ‘illness’ we develop a set of beliefs or ‘ideas’ about it. Of course, these are influenced by many things such as our previous experience of that illness, personality variables such as optimism/pessimism, social support and many other factors. All of these things as you can imagine, affect how we respond to the illness or diagnosis. Research has consistently shown there is a pattern to the way we do this which includes our ideas about the illness identity, ideas about what caused it, ideas about control or cure and the consequences it will have on our life.

There are a growing number of studies that show that if individuals hold a generally negative view of their illness –for example, attribute a large number of symptoms to it and predict more severe consequences, then their health outcomes tend to be worse. It is associated with increased risk of disability. And slower recovery. And what makes this evidence so convincing is that it seems to occur independent of the severity of the condition.  (Botha et al, 2006; Scharloo et al, 2000; Scharloo et al, 1999).

So as a patient looking for a way forward, and as a psychologist looking for ways to improve health outcomes this represents a massive opportunity. By influencing peoples’ perceptions or ‘ideas’ about their illness early on, there really could be an opportunity to improve their health.  This has already been demonstrated to be effective in conditions such as heart attack (Petrie et al, 2002) and fatigue management in MS (Skerrett & Moss-Morris, 2006).

This is not the same as saying ‘Mind over Matter’. I do not suggest we can think ourselves better. I would not patronise you so. The process is more complex than that. What this highlights is that there is an opportunity, perhaps during and after diagnosis (which is a scary process often handled by medicine in a clumsy way). An opportunity to influence how people regard the illness. In doing so, it may well impact their future.