Entry for ME International Stories on living with ME

The cherished things I had to leave behind will finally be here soon. A year and a half ago, I had to leave my home due to a lack of social services and suitable medical care. I had been severely ill with undiagnosed ME for two years at that point—much longer if you count the times when my illness was milder or more moderate. I had seen all the top doctors in the state that my insurance would allow, but no one knew what was wrong with me. My husband had to work constantly to keep a roof over our heads, and I could not get out of bed for necessities like food or bathroom use. Our house was a mess. We had to get out.

When we left for Oregon (though we ended up in Indiana because my illness got even worse on the trip, and if I had gone any further, I would have faced paralysis), we had to give away or sell everything we owned and put our most cherished belongings in storage. Only what could fit in the sedan could come with us—and since we have three rabbits and a dog, that was not much. Leaving broke my heart, but it was the right decision despite the struggles.

We got stranded in Indiana in September 2023 due to the severity of my illness. I could not travel any further, which is still the case today. We were homeless in a motel for several months, and figuring out the social benefits system and who to trust in Indiana was not easy. But today, I live in a Section 8 apartment that I got approved for through the National HUD program—the Non-Elderly Disabled Voucher. I receive full Medicaid with a waiver that allows my husband to be paid to care for me full-time, along with other benefits. I also got a REALLY nice wheelchair to help me get around when I need to. I found great doctors who finally diagnosed me—including a specialist who also has ME. I also finally have my hearing for Social Security benefits coming up in March.

But this life is not all rainbows and sunshine. My husband and I are incredibly lonely and homesick. Our families abandoned us when I got sick. We have friends, but we are not very close to them—either emotionally or geographically—so we do not feel like we can reach out whenever we need to. We are constantly researching ways to get things we need because of our very limited budget, and there aren’t many options out there for us. The stress eats away at us, making my condition more severe and making my husband sick as well. I spend most of the day sleeping, reading large-text e-books, or listening to calming music. Light and certain sounds can exacerbate my illness.

Most of my doctor’s appointments are done online because, even with my amazing wheelchair, it is impossible to leave my bed—let alone my home—most days. I am one of the very unlucky ME patients with comorbidities that make my illness even worse. I also have fibromyalgia, Hashimoto’s disease, postural orthostatic tachycardia syndrome (POTS), and complex post-traumatic stress disorder. All of these conditions make everything so much harder. Some days, I feel so sick that I wonder if I should go to the emergency room, but they are never able to help me, so I just lay in bed and suffer with constant, widespread chronic pain, flu-like symptoms, a mysterious chronic cough, and unbearable fatigue.

The scariest thing I deal with daily is knowing that policy changes could threaten my benefits and security in Indiana—or in the United States as a whole. Even with the benefits we have, we are constantly struggling financially. If we lose them, I do not know what we would do, as I cannot travel, and we do not have the resources to move.

I am told I am resilient, but I don’t want to be resilient anymore. I want to feel well. I want to go back to school and get a PhD. I want to travel the world. I want to live abroad. I want to see my friends. I want to have a permanent home. I want to look at my future with joy and excitement rather than dread and darkness. But this is my life.

In reality, the thing I have to look forward to is the belongings I had to leave behind. I am excited to see them again, but that excitement barely scratches the surface—because while these things will bring me joy, they will not fix my situation. I will not be better off. Every day will still be filled with suffering and new battles to fight. I will just have to endure it and keep being resilient.