Dear Robert

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Dear Robert,

I have recently been diagnosed with Myasthenia Gravis and I feel that my family doesn't understand my condition.

I had been poorly for 6 months before my diagnosis and it has put a big strain on my home life as my family have never heard of myasthenia. They think I can still do things as normal because I look healthy but inside I feel very weak.

I am on sick leave from work as I can't even complete the simplest of tasks. The other night my husband came home tired from work and was annoyed because I'd been home all day and hadn't cooked the dinner. What he doesn't realise is that I have days where I am too exhausted to do anything and that is what happened that day.

I feel like it is my fault that I have myasthenia and that I have brought it upon myself.

I don't know anyone who has myasthenia and I feel alone with no one to talk to.

Will things return to normal?

Vera

 

Dear Vera,

I’m sorry to hear that in addition to the way you are feeling about living with MG, you are also stressed about the impact on those close to you. As I was reading your letter, several things came to mind: Firstly, neither your family nor your husband appear to have any understanding of MG and how it can and does affect those who have it. Secondly, you blame yourself for the events which are not in control i.e. getting MG and being unable to do as you once did (because you have MG). The question, however, that you pose in your letter, “will things return to normal”? Is often the first question that people ask me when they start counselling, so let’s start there.

I often wonder what “normal” looks or feels like. It’s one of those words we all use to describe static positions – our lives, our work, our relationships to name a few. That said – none of these are in fact fixed in time or space rather than being dynamic and changeable as time progresses.

From the time we are born, we constantly evolve and our sense of what’s “normal” changes apace with our emotional and physical needs. A baby, for example, has a very different “normal” to a 24 year old. If I were to ask you, “which normal would you like to have – the one you had when you were 6, 12, 24, etc?” Which would you choose?

I think that what you are really asking is, “will you be able to do the specific things that you were able to do at a particular time in your life before the MG”?

Break it down – make a list of the particular things you would like to still do (and perhaps some you might want to drop?) Then focus on the “keep” list and look at each in turn rather than on the whole list. Are there different ways to do things on the list? Can things be changed or altered to make each item on the list possible? If, for example, the “normal” you want to keep is providing a meal for your husband – perhaps you don’t have to actually cook anything at all to do this? This is the time to look at the resources available to you – family members, friends, local supermarkets, delivery services etc. This is where the local MG support group might come in useful to you – having the local knowledge of the area you live in and people who have an understanding of what you are going through and who might have already done this.

At this point, let's go back to the first part of your letter; the fact that you are at the moment the only person who has an informed view of MG in your family and relationships. Get them involved Vera! All they know at present is that things are different but they don’t have a reason for it and in the absence of this they could be imagining all sorts of things. Minds going into overdrive perhaps to work out what’s wrong. Rectify this and give them the reason – then ask them for their support and help using the information you already have about MG and your new list of “keeps” that I’ve mentioned. Don’t forget, the myaware website and the Facebook groups are full of information and support for those with MG and their carers to.

If you feel that you would like to talk further about some of the issues raised here. Myaware has a confidential counselling service for its members – you just have to make the initial contact!

 

 

 

 

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