Why I'm Not Celebrating the 4th of July as a Woman With Chronic Illness

I had nothing to celebrate this July 4th. It used to be my favorite holiday. My favorite years were driving the ambulance in the parade and having fun with the firefighters and police department. This time of year we were on duty, but able to enjoy it, and to have some laughs with each other. For the first time in my life, this holiday, the pride I used to feel, is just gone. Sometimes my brain feels numb, and other times I start to feel anxiety. It’s that sensation that you get right before a full-blown anxiety attack. My chest is tight, my neck feels full, and it becomes harder to take breaths. For the first time ever, I worry about having access to an IUD birth control device.

I’ll tell you a secret. I haven’t had a cycle since 2013. When they told me that I had cancer again, I stopped having a cycle. My body literally just physiologically acted and shut down my long-broken oven. I would have loved to have been able to use it more than once. Are you surprised? Do you expect me to be against babies? The one thing I never got to do in EMS that I wanted to was “catch” a baby. I can’t tell you the number of heartbreaking miscarriages that I attended in my career.

Back to the point. With the IUD, I have released a very low dose of hormone into my uterine walls. The use of this device has caused thinning of the walls, and decreasing in the adenomyosis that had occurred. One of my surgeons told me that his handprint stayed when he examined my “boggy” uterus during surgery. The amount of pain and suffering that I would go through at times, and the fact that I had already had cervical cancer, which cost me half of my cervix, left my reproductive organs far too broken. I need this for very real reasons. These laws are all ready to be written and enacted, to be introduced into states, and remove coverage for birth control such as IUDs.

When I was in my 20s, I had polycystic ovaries, along with newly diagnosed endometriosis. The endo actually barred me from military service. I was in the hospital almost every month with ruptured cysts and horrific pain. I would internally bleed from the endo and fill the cul de sac with fluid from the ruptured cysts. The ones that didn’t rupture would move as I did, and bang into the insides of my body.

The doctor put me on back-to-back pill packs. Yes, birth control pills, with the idea of preventing menstruation. I remember feeling humiliated, and so very small and dirty, when the pharmacist refused to fill the prescription. He said, “It goes against my religious beliefs.” He motioned for me to leave, as he waved my script back in my face in a rushed motion that I should take it from him, as if it would burn him if he held it any longer. I remember hiding “the pill” from the sight of others, worried about judgment even as I was wheeled out of work by an EMS crew with a ruptured ovarian cyst. I felt ashamed, as if my reproductive organs could be seen by others. It caused me to crumple to the floor in a fetal position. It felt like shards of glass trying to get out of my torso. Not only my abdomen, but my entire body revolted from the pain and tried to shut down. At least I didn’t puke, at least not at first.

Let’s face it. I’ve never had it easy. I have fought against being sickly since I was a kid. All I seem to acquire these days are new diagnoses. The trouble with being chronically ill, especially with rare diseases, is there is never the achievement of a cure. The finality of being able to walk away from it all. It was hard enough when I didn’t have to worry about accessing the care that I needed to live. Now I have fear. The care that I have already sold my life to buy into gets harder and harder to access. Am I now on borrowed time? Will my access be harmed? I’ve talked about this before, from a different angle, most recently in my article, The Reality of Chronic Pain Care, on The Mighty.

This year, I am a second-class citizen. I’ve long felt that way as is. I can’t access the same medical care that I gave. You think you have lived right until they can’t cure you. I have lost the right to have total control over my own body. It feels awful; damn, it feels unreal. Those in power claim to want to stop abortions, while simultaneously not investing in, but removing, birth control access, comprehensive free prenatal care, parental support, WIC, food stamps, housing, education, and so on. The far-right is working for more children to be born into an unsupported life of poverty. Can I tell you from personal experience that those people are assholes? Guess I just did.

This is not politics as usual. This is stepping back in time, and women and people with a uterus are no longer equal. Forced pregnancy is disgusting and dirty. I still feel shocked. It feels like I am watching the birth of Gilead. In my freshman year of college, I read “The Handmaid’s Tale,” a work of fiction that now seems to be becoming real.

This is the new America, and the birth of the underground railroad for women. That is what they have succeeded in creating. They have signed the death certificates in advance for countless women who will die by suicide, ingest poisons, and have backroom abortions. Most of those occur in private homes, typically affecting people of little means. Consistent with out-of-control religious patriarchy, the objective is clear — removing the right to abortion, access to birth control, and forcing procreation on women. None of this is hyperbole. This is real.

Women shaming is already happening. I’ve seen so many social media posts with comments like, “keep your legs closed” and “don’t have sex outside of the bonds of matrimony.” I’m reminded of another Mighty writer, Seanín Hughes, who wrote, “In learning to become a woman, I learned our bodies are subject to social commentary, opinion, and judgment based on how successfully we strike the balance between prescribed function and aesthetic — and we remain at the mercy of those who have the power to tell us we are failing.” When we dress wrong, live wrong, or do something to cause sex to occur. The ability to feel, to enjoy intercourse without the intent to have children. We still fight against stigmas inflicted upon us and edicts we never signed on to follow, and are shamed for what our male counterparts are rewarded for.

We are in a world that was on a great track to creating equality, one I took great pride in being a part of. Now, shamed and sad, I have lost my freedom, my Independence.