I am joining the Women’s March and the Disability March virtually today because I have multiple health conditions, including chronic severe migraine, multiple birth defects that I’ve had surgery for, and allergic asthma, and I’m terrified of losing access to needed treatment and care. I am proud of the intersectionality of the mission and agenda of the Women’s March: https://www.womensmarch.com/mission/. And I stand with both marches today because black lives matter, women’s rights are human rights, love is love, climate change is real, immigrants make America great, comprehensive health care is vital for all, native voices deserve respect, transgender lives have value and they deserve protection from hate and discrimination, and the voices of those with disabilities and chronic illness should not be ignored.
I get a procedure every 12 weeks (about 30 injections in my head) that keeps me out of the hospital, but it wears off about 2 weeks prior to each treatment. I also take anti-epileptic drugs for prevention of severe migraine, and although I used to join protests and marches when I was younger, now I am afraid to do so with all the medication that I am on. I’m 5 days out from the next treatment, so I have been feeling pretty sick today. I tried to smile for this photo but even the smile was painful. The other photo is of my medication drawer.
Most of those medications are abortive medications for severe migraines, which keep me out of the ER. I usually try to hide the fact that I have to take so many medications. I’m pretty uncomfortable with the fact and sharing this makes me feel vulnerable. But sharing this is also a good visual of the severe impact changes to my health care can have for folks like me. Before I had access to proper insurance and treatment, I was on welfare for a time, constantly in and out of the ER, and using my credit cards as a form of supplementary “insurance” to pay for medical treatment and care.
With chronic migraine, I go about my life experiencing migraine (pain, aura–which includes visual disturbances and numbness in my face, hand, and arm–and nausea) every single day. I try not to talk about it too much because 1) no one wants to hear that, and 2) I’d rather keep my focus outward on the world around me rather than on my pain as best as I am possibly able to do.
So, when I say I have a migraine, I don’t mean I didn’t have a migraine yesterday or the day before or the day before that. I mean I have off the charts pain with visual blindness and all sorts of other neurological symptoms which can begin to look like stroke symptoms if left untreated. And when I say I have a “bad” migraine, I don’t mean I have to go sleep in a dark room. I mean best case scenario I need a 3 day, all day, outpatient treatment of infusion therapy at a hospital. Or, worst case scenario, I have to stay inpatient in the hospital for 5-7 days. I’ve only had to do worst case scenario once so far, but I’ve done infusion treatments for many years now.
I am terrified of the coming changes to the ACA. Limits imposed for pre-existing conditions prevented me in the past from purchasing an individual health insurance plan, and even with employer sponsored health insurance, it can mean long waits (6 months to a year) before I can get coverage for the pre-existing condition. In my case, that means I can’t work. Simple as that. I am completely unable to work without proper treatment. Other changes could mean reinstatement of lifetime caps and high risk pools and increased denials of coverage.
I am also more deeply concerned about worsening treatment and wider polices that will affect people of color, those who are undocumented, women, the disabled, and my fellow LGBTQ folks.
So, today I join these marches virtually in the best way I can. And tomorrow I continue to find ways to plug into my local community as best as I can.