deaf · disability · disabled · ehlers danlos syndrome · gastroparesis · health insurance · Uncategorized

Having A Chronic Illness/Disability Isn’t Cheap

It seems to be a common misconception that people on government assistance have so much money. Like me for example. I’m on Medicare, Medicaid, and SSDI. That means I’m rich, right? Wrong. So, so, so wrong. While I am thankful that I don’t have medical bills to pay, I still have copays and things that health insurance doesn’t cover. I have 8 meds I refill monthly, that’s about $50. There are over the counter meds I take that insurance doesn’t cover, that’s about another $50. I have 10 as needed meds, I never know when I will need to fill them, so I have to keep money tucked away for that. Gastroparesis flares are costly; $16 for Ensure, $25 for a vegan nutrition drink, $5 for Carnation Instant Breakfast, $5 for soymilk, $10 for assorted juices, $6 for digestive enzymes, $12 for probiotics. There’s the cost of gas to get to and from appointments. That’s just my average monthly medical stuff. There’s other things too, normal things like paying for groceries, rent, personal care items.

I’m lucky that one of my insurances cover hearing aids, otherwise that would be $5000-$10000 every 5 years. I pay $20 for hearing aid batteries every 6 months. I’m supposed to get new earmolds every year, $50 per mold, $100 for both, but I do every 2-3 years. I need a hearing aid dryer, $60.

I didn’t go through insurance for my rollator, $75, because then they for sure wouldn’t pay for my wheelchair, which could easily cost $2500-$5000, and I still don’t know if my insurance will cover it. 

I have spent about $100 in braces in the last 2 years, and have to continually update the one for my left knee.

I’ve spent $150 in humidifiers and air purifiers because of allergies and illnesses, all recommend by doctors.

I need a neck support for car rides, $35, because I have a hard time holding my head up on car rides, and some of my doctors are 1+ hours away. I need a Vogmask, $30, because my allergies are getting worse. I need a new mattress topper because my back and hips need more support, $100. I’m looking into getting a weighted blanket to improve my sleep, $250. 

I got a shower chair, $30, and a shower support bar, $15, to make showering safer. I’d like to get a bathtub bar that would help me get out of the bath, but that’s $30 I don’t have right now.

I could go on.

Not only is being sick and disabled not cheap, but, those of us on Social Security cannot have more than $2000 at a time. This includes savings account, checking account, and any money I have in my physical posession. If I am even $1 over the limit, I risk having my benefits taken away. This means that I cannot save up to go back to school, I cannot save up for a car, I can’t even save up for my wheelchair if insurance won’t pay for it. 

Myths regarding Social Security desperately need to be cleared up. There’s so many false ideas about Social Security, Medicare, and Medicaid, and these false ideas create harmful stigmas for us who need these resources to live.

Many things that I need due to my illnesses and disabilities are costly and add up quickly, especially since insurance doesn’t cover a lot of what I need. Most of these things are added expenses that able-bodied people will never have to worry about, yet they are things that I use SSDI to pay for. I’m thankful for the services I receive because without them, I wouldn’t be able to afford my medical care, medications, and the adaptive things I need for my every day life. But, don’t think that I am rich because I have these services. I have them for a reason.


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