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Disability struggles [during the corona pandemic]

Updated: Jun 14, 2020

Most of the time I don’t let spinal cord injury related problems get to me.

Some problems don't seem big but the butterfly effect is real.

Usually

It’s been almost four months since european countries went into lockdown with all of the consequences that come along. At first, I thought, as long as I’m safe home I’m fine. But now I’m starting to feel the effect. Normally I order catheters and other medical supplies, that I need daily, and they get delivered at home. But now there is a shortage.

Short on medical supplies

Last year the medical supplier started charging money for gloves that used to be free. I started buying my them myself because it’s necessary in my daily routines and without let’s just say, I can’t ‘take care’ of my body safe and properly. My health insurance covers my catheters (small plastic tubes that I insert into my urinal tube to pee, without these I get infected and die). But the gloves, these are also important, and according to the healthcare agency, not mandatory. Not important to cover the costs of these ‘cheap’ products.

Gloves

These gloves are for hygiene. Certain activities are not so hygienic and can cause problems when not being done with gloves. In the hospital these are lifesavers. But people with disabilities, who are not hospitalized now get left out. We are also short on medical supplies!

We use anti-bacterial, disinfected products daily, way before the corona pandemic, to avoid getting infections because we are more vulnerable.

The situation right now, is that everybody in the world feels vulnerable and scared. To protect ourselves we need to be hygienic. Yes, but buying more than you need is causing more damage than you might think.

You don’t need gloves if you don’t have to work with people (first responders, nurses, doctors, physiotherapist) or have to perform other unhygienic tasks with people or animals. I see healthy people wearing gloves to visit the supermarket. They are the ones responsible for the shortage.


These gloves aren’t going to safe you if you get covid, but the absence of these gloves will kill people who need them for other things.


Now the gloves are not available. & I don’t want to get infections.

I’m ‘just' a person with a disability. One of many whos life dependents on these type of products.

Who is responsible?

So, what does one do? I called the doctor, they said sorry you need to call the pharmacy. So I did, but then they said my medical supplier is responsible to help me out. I tried to call the supplier of the pharmacy, to get more info, they wouldn’t even listen and just hanged up. I tried another hospital supplier, that lady didn’t understand why I called, she said that I as a patient shouldn’t have to figure this out by myself. But hey, I’m trying all the numbers I could find. I called another pharmacy, that lady said I would have to go on Amazon and buy there. #NO. Look I can’t afford to buy gloves that now cost 50 euros (usually 4 euros) for just a small box. I need this every day! I can’t afford this when I use one box a week.


It’s complicated! My medical costs per month are rising but I'm not able to work more. #realproblems

Keeping my head up

Most of the time, I just accept that things aren’t easy and try to make best of it. But every drop counts to fill up a glass. Once in a while my cup overflows (with problems). I feel powerless and dependent (again!). I don’t like it. The last three years I worked so hard to live as independent as possible and trying to fit in society. A spinal cord injury isn’t just 'not being able to walk’.

Solution?

I called my health insurance, the lady on the phone said she felt sorry but can’t help me because they only have knowledge about supplies, they reimburse. She also said my medical supplier is responsible. I called the medical supplier again, the woman told me, I would have to wait till they are back in stock. I checked online, at some medical wholesale, they actually have enough stock but it’s not for consumers. #fml My only option at this point is to buy the way way way too overpriced gloves.

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