Chronic Disease Day 2021: SSI, Health Insurance, COVID
7/10/2021
Today is Chronic Disease Day.
When just about every American is either living with a chronic disease or close to someone who is (even if they aren’t aware of it), awareness isn’t really enough anymore. There are many issues those of us living with chronic diseases face, and those issues need action. We’ve all heard the term "quality of life" - how much does the "quality of life" of a chronically ill person suffer not because of our condition, but because of systemic oppression of chronically ill & disabled people? Certainly our illnesses do cause a lot of our struggles, and I’d rather not get into the social model vs medical model of disability right now, but I do believe a lot of the struggles we face could easily be alleviated if our society was more caring.
Many people living with chronic illnesses are on SSI because a lot of us simply cannot work. Yet the government has used SSI to limit the lives of disabled people by not letting them marry (unless they want to lose their benefits) and severely limiting how much they can save - not to mention, this is all if they can even get SSI in the first place. I have talked to chronically ill people who have struggled so much with this process. The good news is, there is now the SSI Restoration Act, and you can read about it and find out how you can help. It is important to note that this is just one step towards progress, as there are still changes that need to happen and the act is not perfect. It is also important to acknowledge that this wouldn't have happened if disabled advocates hadn't fought for it for years.
What are some other issues chronically ill people face? In some cases, lack of health insurance. Being chronically ill is expensive. It's expensive even if you have good health insurance. Health insurance doesn't cover everything we need, there are some tests and treatments we have to pay for out of pocket. There are medication copays and appointment copays. The little things that can add up too - otc meds, pain relief items like heating pads, weighted blankets, splints, mobility devices, and so much more. So what would help us? First of all, health insurance for everyone, because there is absolutely no reason anyone should have to go without it, especially not someone with a chronic disease. We should keep fighting our politicians on this issue until everyone in the US has healthcare, and don't let them pretend to be allies to disabled or working class Americans until this battle for healthcare has been won. As far as having other medical expenses that health insurance doesn't cover, I can't think of any concrete actions you can take right now, except to donate to & share any GoFundMe fundraisers and support any mutual aid organizations for disabled people that you come across.
In the age of coronavirus, there are more issues concerning chronically ill people than ever. Many of us are more vulnerable to the coronavirus than the general population (especially those who are immunocompromised). Some immunocompromised people are vaccinated but vaccines may not be as effective for them, and others have been advised by their doctors not to get vaccinated due to the risks a vaccine poses for their particular condition (this does NOT mean that these people are anti-vaccine or that the coronavirus vaccines are unsafe!)
If you’re not vaccinated, and it’s because you’re anti-vaccine, I probably can’t change your mind, but if you were just on the fence or procrastinating, PLEASE get it done soon, if not for yourself then for the vulnerable chronically ill & immunocompromised people you could spread the virus too.
In addition to the issue of vaccines, we also had the CDC make the questionable call to update their guidelines to say that unvaccinated people don’t need to wear masks - just as deadlier and more contagious variants were beginning to spread more rapidly. Since unvaccinated people will surely take advantage of this, and since we are seeing breakthrough infections in vaccinated individuals, this made public life feel increasingly unsafe for the already vulnerable chronically ill population. This is why I’m extremely for people still wearing masks, whether it’s required or not, whether they’re immunocompromised or sick or not. Don’t make public life unsafe for immunocompromised people, don’t make them feel unsafe because they can’t tell just by looking at you if you’re even vaccinated or not. Contrary to what some are saying, immunocompromised people shouldn’t be forced to "just stay home if they feel unsafe" - they still need to get groceries, they still want to take walks. A society that forces the immunocompromised to stay indoors because it doesn’t consider the needs of the most vulnerable during a pandemic is a society that should be ashamed.
To name just a sample of other issues disabled & chronically ill people have had to deal with: ableist rhetoric: "don’t worry, only people with underlying health conditions get covid," more ableist rhetoric: "if immunocompromised people are so worried, why don’t they just stay inside?," ableist medical triages and healthcare rationing, the politicization surrounding masks, not being allowed important accommodations like the ability to work from home in certain fields, seeing the world suddenly give everyone the accommodations that disabled and chronically ill people have been requesting for years and told was impossible, seeing people devalue those accommodations (’online schooling is inferior’), seeing many employees take away those accommodations as soon as they could, watching politicians and public figures talk about opening businesses as if business matters more than the lives of people dying of coronavirus, people talking about how quarantine destroys mental health as if the mental health of people quarantining due to chronic illness/disability doesn’t matter too. And so, so many more important issues, too many to list. To say it has been difficult, exhausting and often heartbreaking is an understatement. Soul-crushing is an understatement too.
We also have the issue of long COVID. This is not only an issue for people who already had a chronic illness, but an issue for previously non-disabled people who are now finding themselves chronically ill and disabled for the first time in their lives, and completely lost and confused. They have had to adapt to so many challenges in such a short time, and are having to live with two issues: lack of research since it's still a new condition, and the same medical gaslighting many chronically ill people have been subject to at some point during their treatment.
Aside from wearing masks, getting vaccinated, and continuing to social distance as much as you can - my recommendations for helping chronically ill people during COVID are amplifying our voices & sharing information about the issues chronically ill & disabled people are facing right now. Follow more chronically ill & disabled advocates to learn more about the issues many of us face — even if you live with a chronic illness yourself (I learned so much when I started doing this, even though I’ve already been living with chronic illness for years). Actively seek out writing by disabled and chronically ill people and help give their work more of an audience. The disability community, which includes many with chronic diseases, has been fighting for so many issues for years and this Chronic Disease Day, this Disability Pride Month, & always, we need to be heard.