I wrote After the Diagnosis to offer stories of patients living creatively with chronic illness, as well as personal insights gleaned from my decades of living with diabetes. But it’s only since publication of the book that I’ve really come to understand the difference between an illness that’s invisible and one that shows. In the past year or two I’ve developed a significant tremor in my hand, which turns out not to be an “essential tremor” but Parkinson’s disease. I sometimes feel stigmatized by this symptom, as though people are making the assumption that I’m too sick to manage not just my career but even the activities of daily living. It was this kind of stigma I tried to avoid for three decades, while I kept my diabetes a secret from almost everyone I knew.
These days, when I give talks about the book, I begin with my tremor: I raise my hand above the podium and say, “Can everyone see this?,” sometimes shaking the other hand just for good measure. Talking about, even joking about, what’s visibly wrong makes me feel more at ease, but it also seems to relax other people. If I’m okay about it, so are they. The fact that people know I “have something” is even an opportunity to open up the discussion-to air the question of stigma and encourage people to be more candid about the symptoms that plague them. I can also say that having lived my way around and through one diagnosis is helping me set my course as I begin to cope with a second one.
Parkinson’s is scary because it’s another one of those “forever” things that will never go away; indeed, it’s going to get worse, though how fast and to what degree remain uncertain. It’s in the space of uncertainty that I’ve lived my life with diabetes, and I’m prepared to take charge of the “unknown” again. I’ve even felt paradoxically cheered by the diagnosis; now that the tremor has a name, I can take the right medicine, do the right exercises, eat and sleep right- actually improve my life and health, as I begin to do battle with the illness.I like to think, when something is disappointing or goes wrong, don’t just fix it, make it better than it ever was. A
setback is an opportunity to improve things. (I know, this sounds like, “if life throws you a lemon, make lemonade.” But truisms get that name because they’re true.) My aim with this new diagnosis is to be healthier than I was before, and more willing than ever to try new things, go new places, seek out new directions. I’m going to welcome uncertainty an open space in which to live.as time and illness take their toll.
Originally posted on Psychology Today.
To all who have sent comments, I appreciate your candor in sharing your own experiences with stigma and inhibition. There is a political dimension to”coming out” with the truth of an authentic self, and as Jane Kokemak points out, illness has lagged behind other kinds of diversity in terms of advocacy,outspokenness, and empowerment. I think one reason for that is people’s fear of illness. We live in a society that is health-obsessed, preoccupied with living forever in a state of perfection. People often retreat from those who are sick out of anxiety—“if it can happen to him/her, it could happen to me.” Anxiety… Read more »
I’m very sorry to hear that you are now coping with two diseases, but I am grateful to you for sharing your perspective. I often think it’s strange that from the outside I look “normal” while on the inside (mentally and, obviously, physically), I’m dealing with a very serious medical condition. Sometimes I wish that the struggle were a bit more obvious from the outside, since I think that people often assume that diabetes is much easier to manage than it actually is. But if I actually stop and think about it, I’m grateful that diabetes is so subtle, at… Read more »
Several years ago, in the first college writing class that I taught, one of my students disclosed to me privately that she had Type 1 diabetes. I told her, in the same conversation, that I did too. Later on in the semester, during another meeting to discuss her writing, we talked about our mutual illness, and how it never came up, even though the readings in the class itself were about diversity, and even though other students talked about their own differences: racial, sexual, gender fluid. “Why do you think this is?” I asked her, genuinely not having the answer.… Read more »
thanks for this great post. all of us, whether chronically ill or not, can benefit from your upbeat and creative perspective.
I’m excited to read your book as I too, try to live “creatively” with chronic illness. It has taken me about 25 years to let my mostly invisible illness out of hiding, and it definitely comes with bumps in the road. I still struggle to do my shot in public and was very uncomfortable wearing the pump (when I did) during the summer months. But the more I let others “see” my illness, the better I feel…
Good luck and good health to you!
I was in the middle of a talk yesterday when I noticed my pump infusion set was just out. I had to get up and leave in the middle, to my great embarrassment, irrationally panicking (I’m not getting any insulin! I will die!) as I flew home to reinsert the set.
In other words, I respect immensely your bravery in being publicly “broken.” I all too often want to hide my diabetes, or, more precisely, to hide the fact that I am different, with particular limitations and requirements.
Thanks for a brave and inspirational post. The very invisibility of diabetes makes it easy to deny and often, when it is ‘revealed’ (when I take medication in public, etc.) the sudden reaction to it is a jolt, as though I am not who I present myself to be. I’ll look forward to reading your book.