Invisible chronic illness is one of the things made me a feminist. My whole life I have been sensitive to and advocated for parity for women in medical research and drug trials. Seeing how certain diseases are treated seriously, and others are treated as “all in women’s heads” – mostly because they are invisible, makes my blood boil.
Women are more than three times as likely to have autoimmune conditions than men, and are more likely to have chronic issues with migraines, painful reproductive problems such as endometriosis, and a multitude of other disabling, but invisible illnesses and disorders.
I have been living the health care struggle since my childhood, when my family was on one health insurance, and I was on the state plan which had to take everyone, pre-existing conditions and all. The older I got, the higher prices skyrocketed and the more difficult it became to simply write a check for services and medication.
Those of us who live with invisible illnesses live in two worlds – the one where we “pass” if we are having a good day, and the world we retreat into when our symptoms flare. We may drop out of sight for a day or two or three, but people are so busy they may not notice we’ve been gone.
We sometimes struggle when someone asks “how are you?” We are not always “fine,” even though we might look it. It’s difficult to know how to bring up our illness(es) or health challenges to new friends or coworkers, when it is time to explain why we may not be able to commit to ‘X’ activity. If we hide our illness, we exhaust ourselves. If we bring it up, we risk becoming an object of pity or neighborhood / office / school gossip.
The feminist movement is largely silent concerning women’s invisible disabilities and illnesses. That should not be the case, when just about every woman can name several friends or relatives struggling with some sort of invisible health issue? Off the top of my head, I can name friends and acquaintances with lupus, irritable bowel syndrome, cluster migraines, PCOS, rheumatoid arthritis, vulvodynia, MS, and fibromyalgia. These chronic conditions predominantly affect women.
In the early 90′s, I advocated support for health care reform, when supporting Clinton’s candidacy for president. The young healthy college students around me didn’t understand why it was such a big deal. I wonder now how my age cohort is managing, now at peak age risk for autoimmune conditions and other disabilities, with the still unchanged system in place.
It took me quite a few years to realize that the disability movement includes me, the woman who looks healthy but is not. I realized that people with disabilities are not just those who use wheelchairs and canes, but people like me. It can be a shocking realization for many women in the same situation. We may be so good at “passing” that it doesn’t occur to us that we have any right to the label, and the power that can come from being part of the disabled community.
Now I’m straddling two communities: the feminist community, and the disability community. What both communities want is equality. Hopefully as more feminists self-identify as disabled (healthy looking ladies
with hidden health issues, I’m talking to you!), the two communities can become more integrated.
Ms. M has had rheumatoid arthritis since the age of 10, and has accumulated other autoimmune diseases since. She can still “pass” as a healthy woman in her late 30′s, fortunately or unfortunately
(depending on the day).