I wish more able-bodied people would understand what it really means to have a chronic illness, how it impacts your life beyond the obvious, because sooner or later many illnesses come with comorbidities. (Or life happens and you get more stuff because your body is already weakened. Or you simply fucked up birth lottery and your DNA includes many surprises.)
So here's my most recent struggle, written half-asleep but too awake to sleep again, to give you an example.
A few months ago I got the illness lipoedema diagnosed. I got treatment, but the treatment is fairly expensive when you cannot have a regular 9 to 5 job thanks to your disabilities. (Insurance pays most of it but not the full fee.) Now, there is a way to put a cap on extra medical expenses, you can agree on with your insurance, but your doctor needs to confirm you have regular visits for at least a year and are in fact chronically ill, to get better conditions for calculating the specific threshold. Because the diagnosis is new, I cannot have that doctor fill out the form.
However, I also have epilepsy and have regular visits at a neurologist's office. He might be able to vouch for ne being ill. And my regular appointment was supposed today, I have been very much looking forward to it.
Sadly, I also have food allergies or IBS or a combination thereof. (I did a lot of tests with inconclusive results but cannot find a doctor to dig further, they aren't accepting new patients.) And yesterday evening I had issues with that, to put it mildly, out of the blue. I made sure not to eat or drink anything straining, and yet here we are. I had meds to help me with that, but the neurologist appointment was early in the morning, so I couldn't sleep it over and decide next morning if I am stable enough.
So I had to make a decision.
I ended up writing an e-mail that I have to postpone the appointment due to digestive stuff, mentioned when I am going to ve available, apologized for the inconvenience and all. And just got send the new appointment: End of September. (Because guess what, all specialists are crowded af.)
Thanks to one super random thing I cannot really control, I missed an appointment for one illness and an opportunity for helping me financially with another illness.
I also have to get a new prescription for the special treatment soon... I am going to ask the neurologist's office soon if they can hand me the paperwork without having to have spoken with the doctors, but atm I am still too frustrated and tired for this.
When a disabled person says they miss out on a lot due to their disability, of course this also means they miss out on birthdays or vacations or so, or can't visit specific locations, yes. But it might also mean it hinders them in taking care of themselves, depending on the illness(es) in question.
#disability #disabled #illnesses