A few weeks ago, I attended the first-ever Women in Pain conference, organized by the phenomenal Cynthia Toussaint and a host of organizations. For me, the highlight was the lunch break, during which I met three fabulous women in chronic pain — all of whom could totally understand me in five seconds flat, because we live the same reality.
Most significantly, we discussed how people expect that if we are disabled, we will look a certain way (have a brace, be in a wheelchair) or act a certain way (be completely downtrodden). If we don’t look or act the way they expect — if we are perky, cute, and otherwise full of life — people will assume that we are some kind of con artists or bitches if we say we can’t do something and, as a result, ask for help or set a boundary.
We also shared how we all had been through the ringer of the healthcare system — on the one hand being denied access to health care, because we were considered disabled and therefore beyond treatment, and on the other hand, being denied access to disability benefits, because we weren’t considered disabled.
On the healthcare tip, some of the women shared how they were treated as pill-popping druggies in search of the next hit, and how as a result, they were denied very necessary pain medication. We also talked about how broke we all were because of exorbitant health care bills.
Lastly, we discussed how weird it is to be young and unable to do things that old people can do. I mean, how strange does it feel to tell a grandmother that she has to pick up something heavy, because she is more capable of doing it than we are? One woman revealed how she ended up shattering an entire box of china, because when her elderly family members asked her to bring it over to the table, it seemed so ridiculous to say no.
I felt empowered not only to know that there are other people like me out there, sharing the same struggles every day, but also to have the chance to meet some of those people face-to-face, and to create new friendships with them. One of the most devastating effects of chronic pain is isolation — feeling alone, butting up against a cold, uncaring system, sifting through feelings of frustration and despair. This conference was a great healing balm for the emotional component of chronic pain.
The second highlight of the conference was the performance of two actors — one playing a patient, the other playing a doctor. They role-played two scenarios: The first represented the most common experience that chronic pain patients have when going to a doctor for help — i.e., where the doctor is over-the-top obtuse, obnoxious, and offensive.
The second represented what a patient-doctor interaction could and should be. I got all teary-eyed watching that scenario. My life would have had such a radically different path if I had been treated that way — with respect, true care, a listening ear, an intelligent and investigative attitude, and a partnership. Instead, my experience had many elements of the first scenario, and then some: I was treated with suspicion, contempt, annoyance, resistance, neglect, judgment, blame, and paternalism.
Another highlight of the conference was the art class I took, where we were asked to make two masks: one that reflected our outer face, and one that reflected our inner face, or the face of pain. For me, both faces were one: a sparkly, jubilant, colorful mask full of beads, shells, feathers, and other ornaments. When asked to make a statement representing my mask, I replied, “Embracing and celebrating what is possible.”
Looking at my mask, and thinking about what it would have looked like years ago, I realized that Virginia slims was spot on: I have come a long way, baby!