Monday, September 14, 2009

Chronic illness and disability – not exactly the same thing

Today was a day of small victories. It’s hard to believe it has taken so long to rebuild life since I had to leave work last October. I think I should finally have my new home office up and running just about a year to the day that I had to leave work last year. I never imagined when I left it would take this long, or that I’d still have so many things in life up in limbo. Today, however, the authorizations were done (so I’ve been told) for my new desk and some new equipment I hope will get me working again, at least part time.

It has honestly taken this long to fight all the battles with insurance companies and social security and vocational rehabilitation services (and now Medicaid). There are earnings criteria, waiting lists and lots and lots and lots of paperwork. In the meantime you pretty much have to wait and wait, and wait. If you try to buck it up and look for small ways to overcome and show any productivity, they essentially hold it against you.

One thing I’ve observed through this process is that the “culture” of disability and the “culture” of chronic illness, when slammed together, don’t always fit well together. Service providers in either camp don’t seem to understand the unique needs of clients who have a foot in both worlds

In the world of disability, the name of the game is to figure out alternative methods for accomplishing what everyone else accomplishes. You use what you need, whether it be a cane, or wheelchair, or hearing aid or whatever it is. You develop skills to help you compete on an equal playing field with everyone else such as Braille, or good listening skills. There are all sorts of agencies and service providers and technology out there created just so people with disabilities can learn to supplement their lives with tools and tricks to compete EQUALLY.

And then you have the world of chronic illness. The name of the game is different. You try to manage symptoms and maintain the best quality of life, but there is little if any expectation that with the right “mix” you’re going to function just like everyone else. There is no alternative technique to be used when you can’t eat properly, or breathe properly, or have chronic pain issues or are bleeding at the most inconvenient times etc. You can work to minimize the symptoms, and that often works for years or decades – or sometimes weeks or days. You don’t always know exactly what it’s going to be. The goal isn’t equality exactly; it’s more a goal of regaining as close to “normal” as possible.

For me this past year has involved a lot of guilt. When I feel good for any extended period of time I question myself. Why am I on the path I’m on? Why am I not doing more? And then, just when I’ve beaten myself up very nicely, something happens to remind me why I am not working a “normal” job and may never again. I’ll have five days in a row of “code browns” with my ostomy, or several days in a row with profound fatigue and I realize that if I were back in my old office, I’d be drowning in a different kind of guilt – the guilt that goes along with struggling to keep up and yet knowing you’re not producing the best product possible because you feel like crap.

I try to explain it to some of my friends this way. Quite often I’m very well and working just fine four days out of the week – but on average at least one day a week I’m not working so well. I’m having a health-related issue that is impacting my quality of work, or ability to keep up. So, most of the time I’m quite well and could be productive, but in the eyes of an employer, an employee that would regularly miss a day a week is a problem employee.

My solution – we’ll see how it goes – is self employment. It’s the worst time in the world to try to freelance for a living – but I do have a lot of connections in a niche market. I also think I could offer my services on a broader scale to do projects that require a lot of the skills of journalism, if not the actual practice of journalism.

I really don’t want to do anything in the way of day-to-day or short deadlines. I’m looking for projects where, should I have a doctor’s appointment, or feel ill one day, I can make up the difference the other days.

Also, many of my medical issues, such as the bleeding and the ostomy, I am able to treat better and more quickly at home, and thereby lose fewer working hours to those problems.

Makes sense to me.

I’m not so sure it really made total sense to vocational rehabilitation services. I can’t complain. They have given me everything I asked for (I’m going to take some classes this spring etc.) They are helping me to set up my home office.

To my credit, I made a good case. But, when I did, I was initially met with a lot of doubt about the viability of my plan, and questioned as to whether I should be trying to work at all.

I think it is pretty unlikely that I will ever live a middle class existence again (unless something huge changes). But, I’m not prepared to just sit around on those four good days, or three, or two – or whatever they may be. Because I have the dual issues of a disability and health issues (which isn’t so unusual really), I felt a traditional solution wouldn’t work for me.

I’ve spoken with a few other HPS’ers that have a lot of health issues and many of them have been in the same boat. The schools and the state know how to deal with their visual impairment, but are often at a loss on how to accommodate, or indeed even have reasonable expectations, when it comes to the issues associated with health. It’s easier to say, don’t try.

Even the system can penalize you for trying to do the most you’re able to do. As I’ve waded my way around the world of special services and social security etc. it really seems like the system it’s self is so out of date compared to the practical realities of someone like me. The “boxes” they try to put you in might have made sense in the 1950s before telecommuting, contract workers etc. The rules assume that if you’re going to work, it’s going to be steady work and likely full time work. In order to not lose the very services and care that are making it possible to be productive, you actually have to be careful not to do too well too soon or make too much money.

It’s one thing when you’re striving to achieve that equal playing field and you know that one day you’ll launch into the world and continue to grow. It’s another when you never know what’s around the corner or how long until the next little crisis.


Anonymous said...

Hi Heather
Read your entry for Monday 14th on coping with disability \ chronic illness. Ditto - rang a few bells. Things are the same over here in the UK.
Take care

Mary Beth said...

You speak to so many of my frustrations. While our situations are different in that my disability is my chronic illness, our struggles are similar in many ways.
The "system" discourages one from trying to be productive because if you are 'too productive' you risk losing what enables you do do just that.
While I am able to work part time in a very informal capacity it's not feeding my brain or my desire to contribute. The only thing it is doing is helping to make the ends almost meet at the end of every month.
The system is hugely antiquated.