Work & Chronic Illness: When Taking a Vacation Becomes A Gamble

Last night, my roommate was updating me on her upcoming vacation plans. Letting me know when she’d be going away and for how long (knowing when no one will be around is a pretty crucial thing for me to plan for). As she was telling me her plans, it made me think of vacations and traveling I’ve done in the past. It also made me realize how long it’s been since I’d done anything like that. While my current issues related to MS make it difficult, what I really began to think about was my pre-disability time. Time when I still worked in my career, could still drive, could still mostly function as I had, but ended up never taking a lot of vacation because I either feared I’d need it in the future or had already used it to cover periods of time when my disease had laid me out. It got me thinking that there are probably a lot of people with chronic illness that don’t take sick time or vacation because they’ve already used that time or need to save that time “just in case.”

Exacerbations

Many folks with Multiple Sclerosis have the type known as Relapsing-Remitting, often characterized by having exacerbations in which the disease is especially active and causes the person to have severe symptoms. These periods of time can last days, weeks, even months. Much of the time, when this happens, the afflicted are unable to work. Having unpredictable periods of time when you are sick and unable to work can present some interesting problems as far as working goes. Even if you have an understanding employer (many don’t), you will likely end up having to use a lot of sick time, vacation time, and even stints on short term disability. I know this wreaked havoc on my ability to take a vacation (being home sick is NOT a vacation). Even if I hadn’t missed any time because of my illness, I always feared that I might. My past history taught me that it was always a real possibility. From a perspective of trying to keep my job and pay my bills, I rarely ended up taking time off because it was either used up or I knew I might need to use it up, all to handle my illness.

The effects

Not being able to take a vacation or time off for pleasure really adds to our stress. This then adds to the cycle of being sick and needing that time for our illness. Stress has been shown to be particularly bad for people with MS, often leading to the worsening of symptoms. Personal time for pleasure is extremely important for everyone, and taking time to de-stress is crucial to people with a chronic illness. Yet, our illness often makes this nearly impossible. I often wonder if my inability to take time off for something other than being sick, helped along my disease progression at all. I’ll never know, but it’s interesting to consider, given that we know stress can be such a trigger with this disease.

I’ve spoken before about how you should never apologize for having fun when you have an illness, that’s true regardless of what stage you’re in with illness. However, as I hope I’ve pointed out here, there are many people suffering from a chronic illness that are still working and simply can’t afford to take time off. Even if they have ample sick and vacation time (of which many people simply do not), using it for pleasure can feel like a true gamble, one that many people are afraid to make.

Thanks for reading!

Devin

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