How Vacations Are Different for Me as Someone With Neurological Disease

As my vacation quickly approaches, I am reminded of what it means to go on vacation as someone with neurological disease.  We are not promised a fun-filled week as we pack our bags and head to the airport. The very stressors that impact our daily lives follow us as we embark on our vacation, as they are part of our every moment and cannot be left behind. Going on vacation with a neurological disease will never be the same as going on vacation with a healthy body.

As my vacation nears, I am praying I can stay healthy during flu season despite being immunosuppressed. Catching a viral infection doesn’t just mean being sick for a few days, it comes with a flare that lasts beyond the virus and can prevent us from physically being able to go on vacation. We are constantly washing our hands and avoiding public areas that are heavily populated. Going on vacation is not guaranteed until we arrive at our destination; many of us have had to cancel vacations due to illness or a disease flare.

As we plan for our trip, there are accommodations we may need to ask for as we think about traveling. The airport can be a daunting place for someone with neurological disease, as it requires a lot of walking and standing. Reserving a wheelchair does not always mean we are full of energy when we reach the terminal; the packing, movement of bags and checking in has already diminished our strength and left us with fatigue and weakness that is indescribable. There is a constant anxiety the vacation may be too much for our body to handle.

Being on vacation does not mean we have a break from our disease. Our daily excursions on vacation are limited in the same capacity our home activities are. Our vacation may be focused on relaxation and rejuvenation as we’ve been forced to give up on the adventures. Although we may not discuss it, we are mourning the loss of adventures that were once part of our lives. So the next time your friend with a neurological disease tells you they’re going on vacation, that doesn’t mean they’re doing better. It just means that, like everyone else, they need to get away. They need a change of scenery, some time to relax and a chance to be pampered. It means all of the energy put into reaching their destination is worth it in the end. And given the fact we can’t go on vacation as much as we used to, being away is that much more special when the time comes.

To all of my Mighty warriors, I wish you a vacation in which the joy thoroughly outweighs the struggle.