Another of the questions that was foremost in my mind when first diagnosed with MS was "How am I going to be able to work to support my family?" I'm still not sure. My wife and I made the decision that we should raise our kids ourselves instead of relying on professional caregivers. Instead of living the American Dream we have a smaller house than we can afford, stay out of debt as much as possible, and keep our cars for 10 years. Right now I'm at the stage where I can still work full-time, it's just ten times harder for me than it used to be. I wish I could cut back to half-time, but I need that full-time pay. I have a cross cultural marriage - I'm a computer geek and my wife is in the Arts. This means that even working half time I can earn twice as much as she would earn full-time. So if I cut down to half-time and she works full-time we'll be down about 25% in salary and that's not even counting the extra expenses such as day-care for the kids. Just thinking about it scares me. But at least I have a job, one that's reasonably secure and comes with full benefits, so I shouldn't complain.

There's also the question of whether you should go public with your disability at work. I've read sound advice on other web pages that you should first ask yourself "What do I hope to achieve by telling about my MS" before you do it, and to make sure that you have a concrete goal in mind rather than just trying to elicit sympathy. I guess you can say that MS is a "need to know" disease. I told some of my closest friends almost immediately (that's what friends are for, right?) One of them quite sensibly pointed out that once you make a claim under your medical insurance, the cat is out of the bag. That's true particularly if your employer has a prescription plan. Anybody with an ounce of sense can look at the drugs you've been prescribed or the physicians that you've been seeing and put two and two together. However, a large company is often rigidly stratified into small groups that don't communicate. The folks in Human Resources typically don't tell anybody anything if they don't have to. So I figured that my secret would be safe for a while.

I guess what prompted me to go public was the idea of accountability. I was probably wrong about this. I have gotten a few accommodations from my employer, but my superiors have always found subtle ways to make me pay for them. The Americans with Disabilities Act is a tool that you can use to help persuade your employer to accommodate your disability. I'm not a legal expert, so make sure you read all that you can about it. Since I am already employed, the part of the ADA that interests me is the part where it says that an employer must by law make reasonable accommodations for a disabled employee to allow them to perform the primary functions of his or her employment. A disabled employee is apparently excused from secondary or peripheral requirements of employment. Basically, the employer is free to define the primary requirements of employment, and is free to define what is a "reasonable" accommodation.

If the employer and the employee have a difference of opinion over an ADA issue, the disabled employee need only make a complaint to the Department of Justice. Supposedly they will investigate and if necessary, take the matter to court themselves. If the Justice Department fail in their lawsuit, the employee is then free to sue in a civil court. I've never done this and hope never to have to do it - my life will be short enough already and I don't have time to waste in this manner, but it sure is nice to know that I have backup if I need it. Not that I want to antagonize my employer. The ADA makes a specific warning to employers to avoid anything that smacks of retaliation or reprisals against a disabled employee who uses the ADA, but there are always people with nothing better to do than find subtle, painful, and sneaky ways of making it be known that you are no longer considered a "team player". I experienced that even before I became disabled - it's part of "business as usual" at any institution that has a lot of intelligent, creative, active, and ultimately frustrated individuals.

The bottom line is that while we have the ADA to protect us from the worst of the depredations of our employers, we shouldn't expect everything to go our way always. This is not a perfect world and there will always be gray areas. Ultimately we are the ones who will suffer, and it sucks. Period. End of story.