Help Claire Survive Severe Chronic Illness
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I am permanently sick with chronic illness in the form of severe ME/CFS or CFIDS* (I also have POTS).
The condition became disabling in 2019, when I found myself completely bedridden for several solid months, unable to walk, stand, or even sit upright, unable to read or write, with drastic loss of my motor skills and speech function, constant profound exhaustion, weakness so extreme it was a struggle to lift my arm a few inches, severe brain fog, and constant unrelenting body pain. Since then, most of my life is spent bedridden sick in isolation, unable to move, think, or speak. My illness condition also means I have a dysfunctional immune system and that I very easily catch and become severely ill with viruses.
In the past year, I was bedridden sick 253 out of 365 days.
On the days when I am not severely ill with a virus or flare-up, I still have an extremely limited amount of energy and can’t handle more than a couple hours of low-level activity. A single trip to the grocery store or a dinner with friends is enough to trigger days or weeks of bedridden illness.
Before getting severely sick, I was a teacher, writer, and scholar who studied United States colonial violence and was a longtime activist involved in organizing efforts for the protection and return of Indigenous sacred sites, prison abolition, and migrant justice. But since chronic illness took my life away from me, I can't really do any of those things anymore.
Living with this illness means that I am unable to hold a job and have been unemployed with zero income since August 2024. I’ve been paying my rent and bills with credit cards, but they are now maxed out.
I’m in the process of getting SSI, but it will most likely take at least another 1.5 years before I get approved (if at all). I’m also on the waitlist for Section 8, but it is a 5+ year waiting period.
In 2024, 30,000+ people in the United States died waiting to get approved for SSI benefits. That number is expected to at least double this year. The vast majority of houseless people in the U.S. are disabled. This is not surprising to me. Unless you have enough money to live on for multiple years without any income, or have family/a partner who can financially support you for multiple years, it is pretty much impossible to survive this process.
Due to a recent COVID infection and ongoing long-covid symptoms, my health has taken a huge setback and has even further reduced the already extremely limited amount of activity I can handle on a daily basis.
I’m out of options and don’t know what else to do but to ask for help.
As I am currently entirely unable to work, I am trying to raise funds to help me pay for rent, bills, and essential medication (not covered by Medi-Cal) while I wait for SSI approval.
Anything you are able to contribute makes a huge difference for me and I am extremely grateful.
Thank you so much for your support!
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*A few notes about ME/CFS:
ME/CFS/CFIDS is under-researched and very poorly understood. ME/CFS stands for Myalgic Encephalomyelitis or, the very unfortunately named Chronic Fatigue Syndrome (a name I really loathe because it is so inaccurate & belittling), or chronic fatigue and immune dysfunction syndrome. I also have POTS which is common for people with ME/CFS/CFIDS to have as well, but not always.
ME/CFS/CIFDS symptoms can range from mild to very severe. At its most severe, ME/CFS/CIFDS renders people completely immobile for years, requiring 24/7 care and use of feeding tubes.
There is no cure for ME/CFS, but I am hopeful that I might be able to reduce the severity of my symptoms over time. In the rare cases where I've heard of someone successfully recovering from severe ME/CFS, it was because they had the financial resources to not have to work and were able to spend years solely focused on recovery.
If you'd like to learn more about ME/CFS, here are a couple resources:
Organizer
Claire Urbanski
Organizer
Emeryville, CA