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11 Dec 2005

How does one deal other people’s reactions, when one is diagnosed with a crippling disease?
I have finally received a definite diagnosis of Multiple Sclerosis. With the recent commencement of my second attack, I felt nauseous with shock for three days, because I predicted immediately (and correctly) that it would confirm what my neurologist (and I) had been suspecting, all along, since my first attack in 2002.

Most of the time I feel fine with it, because I have read a lot of autobiographies by people with the same illness who have talked about "the gift under the dragon's wing" and the hidden blessings that all serious illnesses bring. I do at times, however, still feel a bit overwhelmed and even sad. Also, my concentration span is extremely short.

I find that I don't want to be around people anymore, because their attitude towards my illness irritates me. Either they are in denial and insist that the doctors have made a mistake, or they say “[they] have the greatest confidence that everything will be fine”, or that “maybe [I] just have the benign form of the illness”. Some members of my (immediate) family avoid the topic completely and pretend the disease doesn’t exist. They never ask me how I am, or what the results of the tests were. Then there are others (outside the family) who take it for granted that I must be feeling extremely depressed and devastated (which I'm not) and this, too, is exasperating.

I have never been married, and I don't have children, although I this was definitely not by choice. Seeing pregnant women around me is very depressing because I know that my chances of having a child now are extremely slim, especially since I have a serious illness. I live alone, and have no support system, and no family in the province where I am staying. But I have, nevertheless, chosen to be alone during the Festive Season because I feel that it is inappropriate to be “celebrating” at a time like this, especially in the presence of people who display bizarre reactions to my illness.

How does one deal other people’s reactions, when one is diagnosed with a life-changing disease?
Answer 432 views

01 Jan 0001

Hello Bronte,
Sorry to hear of this unpleasant diagnosis. Congratulations on your very normal but unusually competent way of handling it so far. I remember a young medical student of mine who received the same diagnosis in his last year at medical school, and how hard he found it to adjust.
In different phases of such an illness, the situation shifts as regards others. There are times when nobody else would know you had a problem unless you told them ; and times when the illness will reveal itself to others, in any case. So sometimes you can wchose whether or not to dicslose to others, if anything, and what to disclose ; at other times you have less choice about that.
I suppose one also needs to decide what one wants and expects from others. In my own recent unexpected arrival of a notable disability, I have decided that I want very little from others, though I do need some occasional help with transport. SO I clarify what I need to those who might be able to help, and we negotiate a way that suits both of us best. I disclose the nature of my injury etc in situations where otherwise people would wonder why I 'm not using my left arm, or why I'm walking oddly. It lessens their puzzlement.
Like you, perhaps, I find the most annoying are those who think they're being most helpful ; those who insist that everything will heal perfectly and soon I'll have no troubles at all. I know that is nonsense, and it's simply a waste of my time --- and shows me they're more concerned with anodynes and remarks that make THEM feel better, than in caring anything at all about how I might feel. And indeed that is an insight I have always found useful --- to recognize that being ill or inform can be threatening to others, who tend to say things in order to comfort themselves more than you. Then, instead of becoming too annoyed at their fatuous comments, I think to myself "Well, if you can believe that and find it comforting, enjoy!"
When one is disabled, one becomes frightening and threatening to others, by reminding them that life and well-being are fragile, and that they, too, could come to grief.
Others, as you have observed, resort to denial, and to pretending that there is nothing amiss. OK, except when this results in direct inconvenience for me ( as when someone is holding out something to give to me, but aiming it at the hand in which I cannot take it ) I tend to largely ignore that --- it suggests to me that they can't handle the issue or topic, and I haven't the time to deal with their personal psychopathologies when my own keeps me quite sufficiently occupied !
I understand your feeling of preference for solitude, though it is important not to allow this to lead to singular misery, having no other input, and concentrating on what one has lost or mislaid, rather than making practical plans for what can yet be practical and desirable. Seeing a realistic rather than a sentimental counsellor is helpful.

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