Guest post: Making the most of your summer

Vacations and holidays can look different for those of us with a disability or chronic illness.  Much of the time all we can see is the extra work that comes along with packing and unpacking suitcases, sitting in a car for long periods of time, and all the extra walking that comes from sightseeing and going from one destination to another. We know because we have more than likely attempted at least once to recreate those picture perfect vacations or those fabulous holiday parties from before our sick days. The problem is that it takes us at least double the energy if not more to do what a normal person could do. And then comes the burn out afterwards. We pushed ourselves too far. Now we have a huge mess to clean up or a long trip home and zero energy left. Then comes the self loathing, or the questioning God, or the berating oneself. Why can't I be like everyone else? Why can't I do the things they can do? Like get the picture perfect family photos like they get? Why do I even bother? I didn't enjoy myself. I didn't have fun. All I did was exhaust myself. Maybe just skip the family vacation.

For many of us with a disability or chronic illness our already overstretched finances need curbing wherever we can and taking a vacation is often one of the very first things that we cut from our budget. Those of us who receive disability know that it is barely enough to cover our needs, and those of us who work may have needed to cut back our hours because we struggle with fatigue or pain.

After working since I was fourteen I eventually quit working full time at the age of thirty two to be a stay at home mom. The daily fatigue and pain I was feeling from inflammatory arthritis, thyroid disease, and fibromyalgia finally got to be too much. Our family lost half of our income in that moment. Vacations were temporarily put on hold. Once we got used to the loss of income and got our equilibrium back we began to take vacations again.

Sometimes we are afraid that where we are going may not have accommodations for our disability. Maybe our disability is slightly embarrassing(think colostomy bag or catheter) and we don't want to leave our comfort zone. What if we are stuck on a plane or cruise ship and need emergency medical help and can't get the help we need? There are so many reasons why vacationing is more complicated if you have a disability or chronic illness. It can also be a little bit scary. I wish I had a perfect answer to calm your fears, to finance your vacation, and to give you the energy to enjoy it to the very maximum of your ability. You have to decide for yourself and your situation what is best, and sometimes you can have the most fun you will ever have in your own back yard.

    ~  Courtney Diggs