Enjoying Important Events With Lupus Despite Pain
Being chronically ill often means missing out on important events like weddings and birthdays. I know this all too well, having dealt with SLE since 2005 and having missed out on countless special events.
I think the one that hurt the most was missing my grandmother’s funeral back in 2010, but because I was so sick with the worst flare I ever had there really isn’t much I could have done.
The thing about having lupus is there will always be people who just don’t understand, even people in your family. There will be people who accuse you of not coming to events because you don’t want to, or exaggerating your symptoms to get out of things.
While there is no doubt some people might actually do this, the majority of us are upset when we have to miss out on big events with family and friends, and skepticism from others doesn’t help.
However, us lupies are often able to attend these important events — and sometimes even participate, such as serving as a bridesmaid, godparent or other position of honor.
Here are some tips I’ve compiled for attending (or declining, if necessary) in good graces.
Communicate About Your Illness
When I was first diagnosed with lupus, I was incredibly embarrassed to tell people I had the illness. Instead of saying anything, I would often wait until the last minute to tell people — until the disease was causing a problem.
But for most people, this sort of behavior will make them wonder why you didn’t tell them in the first place, and even question the authenticity of your statement.
I suggest you always always tell people you suffer from SLE so they know there is possibility you may not be able to attend all their events or participate to the full extent. This way, last minute hurt feelings will be minimized. A true friend (or genuine family member) will understand the limitations of your illness.
Prepare Yourself For the Event
If you’re going away for the event, it is especially important that you are prepared. If you’re going to be exposed to the sun, make sure you have packed sunscreen, a hat and anything else that may protect your skin in the sun, since lupus and the sun don’t mix.
Make sure you have all of your medication, including pain medicine. Sometimes I even take cold packs to place on my joints if they start swelling or hurting, which you can do in a break from the festivities or if you can sneak off to your hotel room for a few minutes.
Sometimes parties and family events can be draining (lots of socializing and sometimes even dancing!) so you want to make sure that you can enjoy the festivities as much as possible without pain. You aren’t going to have fun if you are trying to grin through severe pain, nor will you be as sociable as you would like.
Next page: accommodation and mobility aids.