I desperately want to leave my husband, but my chronic health conditions mean I'm dependent on him for all of my health care.
When my husband and I got married ten years ago, we were both in our late '30s with well-established careers and no debt, and we each owned our own homes and cars. I was an engineer with a great job, plenty of savings, and good health. We came into our relationship as equals, and our marriage felt like a true partnership—at least at first. Spoiler alert: This was just the beginning of one of the hardest experiences of my life, and now I want—no, need—a divorce, but I feel trapped in my marriage with seemingly no way out. Why? The health insurance.
Our marriage was great at first. We decided that we wanted to have a baby right away and that I would quit my job to be a stay-at-home mom. I got pregnant instantly, which was surprising since I was 37 at the time. My pregnancy was a bit rough, but I made it through the nine months and we had a healthy baby girl.
Around the same time, I started having headaches and vague pain in my back and shoulders. My whole life I've been healthy and athletic, but suddenly I could barely get out of bed. I saw several doctors who diagnosed me with, essentially, pain and migraines. Not the most helpful diagnosis, but I was able to manage it during the pregnancy and through three years of breastfeeding with just light medication.
Then, my health problems intensified. The pain and migraines continued to worsen and I saw every specialist in my area, including multiple neurologists. They performed test after test, and I've tried every treatment they suggested but with no luck. Two years ago, I was even wrongly diagnosed with thyroid cancer and had surgery that I didn't need to remove part of my thyroid. Finally, I was diagnosed with fibromyalgia and chronic migraines, which is still basically "chronic pain and migraines" but with a fancier name. I was right back where I started. The doctors and treatments have offered little relief and my condition is even worse. I'm up to 15-25 migraines a month and, on top of it all, I have insomnia now, too, which throws me in a vicious cycle of sleeplessness, pain, and headaches. (Related: Read about how one woman finally got answers for pain after 15 years living with fibromyalgia.)
There's one medication that helps my migraines, but it's incredibly expensive. One month's supply costs more than $1,000 and there's no alternative or generic form available. Without the meds, I end up in the ER.
Then there are my daughter's health issues. She has Precocious Puberty (a condition which caused her body to jumpstart puberty before she even hit 8 years old), a thyroid disorder, and diagnosed learning disabilities. She requires medication and therapy, all of which costs thousands of dollars a month as well. Thankfully, we have health insurance which covers most of this. It's not great insurance—I still have to pay a lot out of pocket—but in a couple more months I will hit my out-of-pocket max and all our treatments will be completely covered for the rest of the year.
So what does all of this have to do with my failing marriage? Well, because I'm unemployed, it's my husband's insurance that is keeping me functional and my daughter healthy.
Unfortunately, my marriage has been on the rocks since our daughter was born. My husband kind of detached when he saw her. I think he felt that taking care of a baby was too overwhelming. So he just walked away from both of us emotionally. We've tried therapy, together and apart. I've tried self-help books and tapes, and lots and lots of talking. But he's now unwilling to work on the problems. We haven't had sex in years, by his choice. He barely talks to me or our daughter. I'm utterly miserable, and I know the stress of my bad marriage is making my health problems even worse.
Our health is entirely dependent on us remaining married. My fibromyalgia makes me exhausted, so job-hunting is a daunting task, to say the least, and the migraines keep me in chronic pain so holding down a regular 9-5 would be incredibly difficult. Even if I did manage to find a flexible arrangement that wasn't too taxing on my body, I'd still have to deal with the fact that after a decade out of my field my skills are obsolete.
I've tried to convince myself that my daughter is better off with two married parents. But the older she gets, the more I think about how this might be teaching her the wrong thing about having self-respect. I'm terrified she will marry a man just like her father if I don't do something now.
But I can't get a divorce and lose the health insurance. Fibromyalgia and migraines aren't typically covered under disability coverage through medicare, and I'd never be able to afford insurance on the open market. Part of me wonders if leaving him and living in a one-room apartment in peace would help my chronic conditions more than living under one roof and having health care is now, but that's a big gamble I just can't risk. Plus, I need to think about my daughter's health. If I become too ill to take care of her, I am terrified of what would happen to her. She could remain on his insurance but children need more than that to be happy and healthy.
I'm a perfect example of how the health care situation in the US is so dangerous for women. I know that in so many ways, I am privileged and so many women have it much worse. I know that my story is just like so many other women stuck in marriages because they chose to stay home with kids. The ACA was trying to help provide a safety net for all of us that would help the most vulnerable, but the AHCA now is stripping away all of those protections.
All I know is that something needs to change. What can I do that will cause the least harm overall? Can I find a job that is flexible and still offers health insurance? How can I make sure my daughter is taken care of? These are the questions that keep me awake at night, as I lay next to a man whom I do not love and who no longer loves me. Something will happen to force my hand. Until then, I am going to see all the doctors and get everything I can fixed before I can't. Because that day is coming, one way or the other. (If you thought this story was disheartening, read how President Trump's plans for health care in America could fatally affect this woman's son.)