Marsha McWhinnie is with the Canadian Amyloidosis Support Network, the “go to” place in Canada for people like me with this odd disease.
In a recent email she suggested the topic of wanting to keep one’s illness a secret. Obviously, both my physique and my personality lend themselves to speaking frequently about my condition. I have also ventured into more public territory through my writing and other venues. There are lots of people like me who will describe every nuance of the state of their gastrointestinal system if you would only stay long enough to hear it. Do you want to know what drugs I’m on? Let me tell you. Do you want to know my blood counts? Here are the charts.
What about those people, however, that do not want the attention, the stigma, the pity, or the myriad of other potentially draining influences that are set upon you when you reveal an illness to the larger community?What if you don’t want your boss to find out and potentially limit your opportunities for advancement?What if you are essentially a private person and do not wish to be under scrutiny and the object of speculation? As I mentioned in a previous post, there is the issue of being identified as your illness rather than as just another “normal” person.
There are so many dimensions to this dilemma. The time needed to be away from work; the changes in appearance – weight loss, hair loss; the anxiety and worry and bearing it alone; the slowing down of energy; and the list could go on. Trying to keep your illness under wraps can add a new layer of anxiety to the whole experience. Of course, sometimes it is easier to be braver when you are alone and only have to deal with your own reactions and emotions.
I would love to hear from people who have felt that they needed to either hide their illness or who felt the inclination to be very discrete about it. What is it like? Why did you make that choice? What are some of your strategies.?