This post originally appeared here in April of 2009. Over a year later, I find I have a lot of the same feelings and experiences and wanted to share this for Invisible Illness Awareness Week
Being or becoming disabled requires a lot of adjustments. Some of these are obvious – changes in lifestyle, in jobs, in relationships, in daily activities. It requires a pretty major mental adjustment, too, one that often isn't obvious, or at least wasn't for me. My illness has been gradual in some ways – increasing fatigue and weakness over the span of years – and quite rapid in others – the onset of movement disorders, major increases in fatigue, etc. At first, I went into this with the idea that my doctors would figure out what the problem was, fix it, or at least figure out a way for me to compensate, and I would go on my merry way. Over the past year, it became pretty clear that that isn't going to happen. Realizing that not only is it extraordinarily unlikely that I'm going to wake up one day and be fine, but that my whole life now needed to change was, to put it mildly, intense. Accepting it was even harder.
Part of the issue is that I think we are taught to approach all sickness as something to be defeated or gotten over. This isn't necessarily a bad thing – there seems to evidence that mindset plays an enormous role in recovery from thing like cancer. A lot of us, and I definitely was (and to an extent, still am) one of these people, are also taught to “walk it off” or “push past it” and to hide or deny our symptoms. Again, this isn't necessarily a bad thing – fear of embarrassment, concern over keeping a job, avoiding making others uncomfortable, etc., are all good reasons to try to hide symptoms or deny that there is a problem. Unfortunately, it can also be very counterproductive.
I finally accepted that I am disabled, am likely to be so for the rest of my life, and that there is a chance my condition may decline a few months ago. I found it enormously liberating. Instead of feeling like my entire life was on hold until I was “well,” of being afraid to undertake new projects, of not knowing what I was going to do next, I could finally start looking ahead. I now plan based on how I feel now, not how I felt a year ago or 5 years ago, or how I wish I felt. That means that I have to set the bar quite a bit lower, but it also means that I have realistic goals and that I'm not constantly frustrated and depressed because I can't do x, y, or z. I've also come to see the silver-lining in getting sick – I've come to appreciate my family and friends, most especially my husband, even more, I'm under far less stress than I was as a graduate student, I'm less likely to feel guilty for spending time on things that I enjoy (I'm still working on this one), I'm more in touch with my creativity. In short, I'm much happier. I'd like to still be able to walk several miles without even breaking a sweat, or work full-out on a research paper for hours on end without getting utterly lost, but I realize that I can't and I've stopped feeling guilty and bad about it. Instead, I try for a few blocks a day and a few easy paragraphs on the blog. I won't go so far as to say the trade was worth it, but it could be much, much worse. The majority of my various doctors and specialists agree that my new mindset is much healthier and better for me and realistic.
The downside to this can be in relationships with other people. Most of my family and friends also agree that accepting my disability and working forward from it as good things and they've been wonderful about helping me cope. Unfortunately, there are a few people who don't see it that way. Like I discussed a little bit above, I think many people view illness or disability as something to be overcome and/or denied. So, for these people, I think that my acceptance looks like defeat or negativity. Some people have been very direct about saying this and I prefer that, because it's easier to have a discussion and explain how I think acceptance is very different from negativity or defeat. With other people, it can be much harder as it tends to be clear only from their actions or implied in their words that they feel it's negativity. I suspect being unfamiliar with the details of my situation probably contributes as well – on a good day I look like a relatively attractive, healthy young woman who happens to have a cane. Pain doesn't advertise, I've learned to compensate for or hide my tremors unless I'm having a particularly bad day, and my balance problems are also fairly hard for others to notice. My fairly direct manner may also contribute - if I'm having a bad day, I say so. If my hands are shaking badly, I say so. How is anyone going to know that I need help going down those stairs or opening that bottle if I don't say so? And I tend to crack jokes about it too. The "negativity reaction" is something that still bothers me, however, even though I know I probably shouldn't let it. I'm tempted at times to snap at people "I'm not freakin' negative, you jackass, I'm a realist, and that's different. Stagger a mile in my shoes!" Obviously that would be counterproductive. Instead I fume a bit and then go find something distracting.
I'm sure I'm not the only one with this problem, but I wanted to put it out there for others to see, those with and without disabilities. Obviously, not everyone approaches their health in the same way and what has worked for me may not work for other people, but I think keeping these things in mind can be helpful in basic, everyday interactions for everyone. I hope anyone with any thoughts will feel free to post here if they'd like.