I guess it’s ramen noodles this month (more like Progresso low-sodium chicken noodle soup in my case). I checked my direct deposit a few minutes ago; I’m only getting less than 1/3 of my paycheck for June. It’s because of being docked for all of the time out sick because of rheumatoid arthritis and the related, doctor visits, etc. over the last year I’ve burned through all my paid time off and so now I’m almost always in the hole.
And I already know that I’m getting more docked out of July.
Life in employment limbo
Also in July, I’m going down to 75% time. I’ve been classified now with my employer as being ~20% disabled FTE (i.e. can work no more than 80%). The good news – 1) I won’t be docked at the same rate since these intermittent, unexpected absences will be better accommodated at 75%. 2) My employer has decided to keep me at 75% in this position than rather than shift me in the shoving-out-the-door position many people partially disabled find themselves in; 3) I keep my health insurance. The bad news: 1) 25% less pay; 2) being effective and productive at 75% (and make sure I don’t exceed that 75%); 3) the continued inability to predict when I’ll be sick, or for how long given flares of RA and neuropathy.
The thing is, I want to work. I cannot imagine being 100% disabled with RA. If you’re functionally that physically compromised, life has to suck (meaning the chronic pain has to be unbearable to manage). Honestly, I’m probably more than 20% disabled at this point, but I cannot work less than 75% and maintain my health insurance. That’s the limbo. At 75% it will take me longer on the clock to be able to retire, longer to accrue PTO, and I’m sure other things that I haven’t thought of that are life-altering. I can’t go on Kate’s insurance because she works there are no same-sex spousal equivalent benefit policies.
I have to (literally) limp along as long as I can in this job until 1) I can retire, or 2) deteriorate into disability.
As I’ve mentioned before, when I was at the Pain Clinic getting biofeedback (I discontinued this to save money), they said that nearly all the patients they see there are already 100% disabled, and haven’t worked in some time. They were kind of shocked I was working as long and as hard as I am (and doing the blog no less), but not surprised at the constant levels of pain I was experiencing. Some of the “pushing through the pain” is about denial, I suppose, but I’ve forgiven myself on the days that it’s too painful to drive, or to take the stairs. But I’ve also given myself leeway to do both when I probably shouldn’t. It’s a balancing act learning your limits (and having limits placed upon you).
Walker-envy, and not giving in…yet.
But I consider myself lucky; I have seen stories of people “eased out” of their jobs not long after their disability arises. I definitely notice those who are worse off than I am getting about — most with canes or walkers — and the difficulties they face. Nothing like looking into the future and thinking what a pain it’s going to be as I get worse. Social stigma of being rendered invisible, your own sense of self-sufficiency (as you’ve always known it) in jeopardy. There are days when I have walker-envy (when I have a heavy bag and the joint pain hits at the wrong time, or I’ve been limping around walking longer than I should), but then it’s just another device in the way. I have a cane, but rarely use it. It’s just another obstacle, and not even very useful when my primary deterioration so far has been in my wrists, which I would need to help support me with a cane.
One bit of good news is that since I’ve started Enbrel shots once a week (an expensive sledgehammer biologic med if you don’t have insurance), I get about 3 good days that are less painful during the week. Pain stays around a 3. Of course the flip side is I take it on Saturdays and it makes me sick Sat and Sun (fever, chills, fatigue). But it’s better than 7 days of 6-7 level pain.
By the way, if I add up all of my prescriptions, if I didn’t have insurance I’d have to cough up $2,300/month or do without some of them. In the case of insulin, well, if I couldn’t have that I’d be dead. We already know that’s the GOP answer to reducing health care costs.
So I’m still working, and my brain still works (though that’s a matter of opinion based on reader comments), for as long as I am able. What goes out the window — blogging, largely. Earning a living clearly comes before writing. I’m down to a couple of posts a day, though I do post on Facebook and Twitter more because it’s just easier. If I have something significant to say I’ll write a post, otherwise it’s just not worth the effort or pain of typing at length. I installed Dragon Naturally Speaking and found it tedious and a pain. I think faster through my fingers than through dictation at this point. Obviously I’m not disabled enough or I’d have switched over to using it.
With my “abbreviated” paychecks and no paid time off, that means no vacation for us this year. Maybe we’ll do a couple of family visits, but no beach, no mountains for the sake of vegetation, rest or recuperation. And even those short trips will likely put me even deeper in the hole. Netroots Nation was my big trip of the year – and that little June venture is what will put me in the hole in July.
And for those who followed the NC marriage amendment battle, now you know I wasn’t kidding when I said that giving $1K to the NC marriage battle was a sacrifice that wasn’t exactly in my best personal interest.
But I know we’re sadly in good company in this economy when it comes to the necessities of cutting back and readjusting one’s life priorities.
My story is just one of many
I just wanted to be as matter-of-fact about something many, many people with chronic illnesses deal with as their health declines. So many find themselves losing their jobs before they are fully disabled because their employers find ways to shove them out the door, no matter what past or current accomplishes they may have given over many years. People end up in this limbo of being partially disabled for years, not able to qualify for disability, but left limping along, praying that they don’t lose health coverage.
* An Open Letter To Those Without Invisible Disability Or Chronic Illness (below the fold)
Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.
Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …
… These are the things that I would like you to understand about me before you judge me…
Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome
Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.
Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.
Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.
Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not not correct and probably not appreciated – if I could possibly do it that, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.
Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.
If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.
Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.
I depend on you – people who are able-bodied – for many things.
But most importantly, I need you to understand me.
If you liked this open letter, you might want to read one of the versions people have adapted for other illnesses, or other languages, take a look at the open letter options page. You can also order a poster or print version of An Open Letter To Those Without Invisible Chronic Illness … from No Pity City. An Open Letter To Those Without Invisible Disability Or Chronic Illness