A lot of people are telling their health care stories these days, and it’s a good thing. There are stories of great pain, of resourcefulness, and of amazing tragedy. Mine is not as scary as the story Cold Waters is living through, as frustrating as Faboo Mama’s story, nor as tragic as that of Doxy’s friend. But it’s what I’m living through. It’s my story.
I have a really great job, with a really great salary and really great health insurance. And I just declared bankruptcy, largely as a result of health care costs. I’m surrendering our beloved house, which I bought all on my own a year after separating from my ex, so that we can move into an apartment again. I don’t know how we’ll move the furniture, because it will tear up my fragile joints if we try to do this ourselves; I’m too short to drive a rental truck; we don’t have the money to pay a mover. We have one month before we hand over the keys at the bankruptcy hearing to get this figured out and done.
But my job is really great. As a “reasonable accommodation” to disability, I’ve been allowed to telecommute full-time. Since my team is scattered about the country, from Florida to Minnesota to Utah, this isn’t so hard. When I need to lie down for a while, or take time for doctor visits or physical therapy, I can. I get to my (teleconferenced) meetings on time, and I meet my deadlines, and I’m available to answer questions and discuss issues. It’s mostly a “head job;” if I were a brain in a jar, with some ability to communicate with the computer, my employer would be perfectly happy. I like this. Of course, the fear is that at some point, I’ll lose this job; whether I transfer to another job within the company or have to find a new position with a different employer, it’s rather doubtful that I’ll be able to continue working from home full-time. And if I hadn’t moved home last August, I would have been on disability leave already.
My chronic condition is Ehlers-Danlos Syndrome, Classical Type. It’s an inherited collagen defect, which makes all of my connective tissue and skin stretchy and fragile. I bruise easily, sprain easily, and sublux (partially dislocate) my joints on a regular basis. If I get a cold with a cough, my ribs start to sublux, and my physical therapist has to put them back into place for me. I have pain from the knuckles in my toes all the way up to the back of my skull. As I’m also a Little Person (with proportionate short stature rather than a form of dwarfism), workplace ergonomics is a huge issue for me. I had to custom-order a chair that is capable of lowering the seat to within 15 inches off the ground. Then I had to custom-order a desk (really, just a work table) that can be lowered to 21 or 22 inches high. Without these, I either had to type with my hands just about level with my shoulders, or I had to raise my chair higher than regular commercial footrests could help. Either way, I had pain from excess strain on my joints.
There is no cure for EDS. Treatment consists of pain management and physical therapy. In PT, we try to keep muscles toned and strong, since they have to do the work of the ligaments and tendons that are too weak and stretchy. My physical therapist wants to see me three times a week. Of course, my copayment for physical therapy is $20.85 per visit. Three visits a week is $62.55, about $250 a month. Of course, that’s on top of the doctor visits and prescription copays. Since I’ve always been difficult to medicate, I seem to be doing best on newer brand-name medications. My pain med copays are $80 to $90 per month. Asthma medication — since my airways are made up of that same stretchy, weak, collapsible tissue — runs another $80 each month; during allergy season, I also rely on an antihistamine that’s in the top tier of my carrier’s formulary, at $55 per month. So that’s $160 per month in prescription copayments, up to $215 per month from February through April.
I’ve tried a couple times to stop taking the meds, in the hope of spending less so that I could pay off the credit cards. The thing is, I paid for this as well, just not in dollars. I paid for stopping the asthma meds with a respiratory infection and a cough that took four weeks to go away. Respiratory infection meant a doctor visit and more copayments for antibiotics and strong cough medicine. I paid for stopping the pain meds with pain, fatigue, injury. I only go to physical therapy once a week now, so I’m only paying about $84 per month instead of $250. I pay for this, too, in currency other than dollars. But that’s what you do when you can’t afford the care you need. You go without, and you just make it work.
Another problem we have is that we eat out too often. The thing is, after working a full day, I’m tired. I’m sore, stiff, and just plain exhausted. My hands ache, my back spasms, and my knees and hips feel weak and unstable. I rarely have energy to prepare a meal. Last night I ate rice and lima beans: minimal preparation, mostly unattended, and not too hard to eat. My husband ate mac and cheese from a box: microwaveable and comfortable for him to prepare. We know we can’t afford to eat every meal out, and I’m often able to prepare something decent for lunch. But this is one more cost of my condition. I read a humor post on a chronic pain support web site last year, that said, “You know you have a chronic illness when… the delivery driver compliments you on your new pajamas.” That sounds about right.
My employer has been reorganizing and cutting positions this summer. There are more cuts expected in the next few months. I don’t know what will happen if my position is cut. COBRA coverage costs a mint, and my entire unemployment benefit would be consumed by it. It probably doesn’t look great to a prospective employer when you walk in wearing arthritis support gloves on your hands, with a knee brace over your pantyhose, and supporting yourself on a cane. “What did you do to yourself?” “Oh, well, I was born.” Of course, I could start my own consulting business, so that I could continue to work from home… when I’m not out meeting clients. But then I won’t have really great health insurance, I won’t be able to afford health insurance, and most insurers will probably deny me coverage. Who wants to take on an individual with my ongoing health care costs?
The saddest part of this whole thing is that I am one of the lucky ones. I’m not (yet) on SSDI or SSI. I’m not (yet) on Medicare. I still have health insurance. After the bankruptcy and moving into a lower-cost apartment, we should be able to balance our budget. But I live on the edge now, and I know it. An operation, a car accident – this could tip us over that edge again. It’s a scary feeling, but not nearly as scary as knowing you don’t have really great health care, or knowing you don’t have any at all but what you pay for out of your own pocket.
And in the US, this is considered to be okay. It’s okay for a woman to die painfully from cancer because she can’t pay for doctor visits and treatments. It’s okay for people to live in fear of minor things like strep throat or ear infections, because they don’t have the health care coverage to pay for doctor visits and lab tests and antibiotics. It’s okay for people to live with disabling pain every day, because they have to ration their meds and visits for treatment.
I don’t believe this to be okay. Remember the inalienable rights to life, liberty, and the pursuit of happiness? Well, that woman who died of cancer because of lack of access to treatment was denied her right to life. Anyone who lives in fear for their health is being denied his or her right to the pursuit of happiness. And we’re told this is right and good, because the alternative is scary scary socialism. I posit that the United States would not turn into the scary scary USSR by providing health care to all its citizens. In fact, the US is only living out its Declaration of Independence and Constitution if it does ensure that everyone can have access to proper health care. If we want to continue to be the land of the free and the home of the brave, then we need to make sure that those who are free and/or brave are taken care of, that their very right to life is upheld.