There is much written about how, when, and whether or not to disclose the fact that you have an illness. Of course, the tenor of the conversation varies by disease type. Some diseases are fairly readily admitted, like Asthma and Allergies. There isn’t a stigma to those, in fact it seems to be generally believed to be something that is genetically unavoidable and not fatal or contagious. There are some diseases that are maybe too readily admitted by the afflicted, such as depression or post-traumatic stress disorder. There is often an odd pride, perhaps born of being finally diagnosed, i.e. officially sick, in the divulgence of these, leaving the listener to panic at the divulgence, as there is no good response to offer the suffer. “Oh, I hope to you get un-depressed soon.” Then there are those chronic divulgers, for whom the grossness or infectiousness of the disease matters not a wink, though it should. These are the same coworkers that always have foot fungus or pink eye or irritable bowel syndrome or kidney stones, and never get just a cold.
When I was diagnosed with MS, I had a really hard time telling my immediate family, not because I feared their reaction, but because I was in total disbelief myself and saying it out loud too many times would certainly seal the deal. It wasn’t denial – disbelief is different. I knew it to be true, and yet at the same time, it was inconceivable; it didn‘t fit with other truths like a categorical mistake.
Days after my diagnosis, only my father, mother, brother, and ex-boyfriend (I know!) knew. My mother and I went to visit my grandparents. At that time, my grandfather, who was 72, was recovering from brain tumor surgery and chemotherapy. We all knew from his physical state that he was home to die. It never occurred to me to tell him of my illness that day. It was inconsequential.
After our visit, on our way out, my mother’s neurologist arrived at the front door of my grandparents’ house. My grandmother, mother, aunt and I were in the foyer. He had come to check in on my grandfather who was still in the den, covered in blankets and resting uncomfortably in an armchair. Small town, long-time residents, only one good neurologist at the local hospital – a house call was not out of the ordinary.
As the doctor entered, he said “I hope this is a good time. I just wanted to see how Spencer is doing.” My grandmother nodded and gestured for his further entry. And then he turned to me and, in a grotesquely sympathetic voice, said “And how are you doing?” And he squeezed my forearm.
With those five words, my grandmother and aunt both knew that I had MS. And the doctor realized his error. Saying quick good-byes, my mother and I fled the scene. At least he spared me having to disclose under my own steam, of which I had none. But I still wasn’t ready to confirm, so I ran.
When eventually my disbelief dissolved, several weeks later, I could verbalize. I think I needed to, in fact, to be able to move out of “recently-diagnosed” world and on to “getting back to business” land. I was finally and still am very comfortable disclosing and explaining my MS, though I am often taken by surprise the unexpected responses I get.
I remember telling one close and childhood friend of mine, my “practical” friend, we all have them, the very matter of fact, let’s get down to business, friend that just plods through life with an even keel. She burst into tears. In a restaurant. It was such an unexpected response. I ended up comforting her and then, afterwards, worrying that maybe this MS thing was even more serious than I thought. My other friends’ “you’ll-get-through-this” optimism had convinced me that it was not that big a deal. But when the practical one cries … you’re screwed.
My next confession to a friend, for this was as close to bearing my soul as this atheist will ever get, was definitely colored by practical friend’s response. I told him, “I have MS and I will never be happy or loved again.” And I cried. He offered his best pep-talk. “Well, now, the person that you meet and marry will know that you have MS, will love you knowing that, and you will begin with a really strong marriage.” Hmmm. Nope, not buying it. But A for effort.
