I was 19 when I got Pemphigus Vulgaris, a lot of you already know my story. I got it on a 1% chance from amoxicillin for treating strep throat. I didn’t know how my life was to change from then, I didn’t know of the cruelty that would come from people and doctors as well. What I do know is, it’s time to raise awareness. There are a lot of rare diseases and today we’re going to join our voices together and be heard.
Listen to us.
If we’re being open enough to tell you about our pain, don’t feel like you have to have all of the answers. Don’t even think that you need to compare it to something in your life, you don’t. Please don’t tell us “at least you’re still alive”. We have enough days where we’re grateful for just that, but many more days when the darkness can consume and being alive is torture. Please, set the phone down for just a second, look us in the eyes and see us. We’re confused and scared and being able to share emotions with someone else helps to relieve the burden.
Please, be kind.
Especially when you don’t understand. If you see a young person in a riding cart in a store, don’t assume they’re just having a joy ride. You don’t need to make a comment about it. Sometimes, we really need those carts. All times, we really just need kindness. We’ve got enough going on without dealing with others negativity. A little kindness, from random strangers, nurses or friends has always been able to turn an entire day around.
Lift us up.
It’s hard dealing with something that you and most doctors don’t even understand. We have enough on our plates without having to deal with anything you feel you need to take out on us. Instead, encourage us. Not with cliché words, if you say you’re going to be here for us then mean it! Don’t disappear when the going gets tough, we value companionship more than you know. It gets very lonely when all you know is hospitals and bedrest. I still can remember every single person who visited or checked up on me and it warms my heart still.
Even though we appreciate your enthusiasm, if we have something like Pemphigus (blisters that turn into open sores all over the body), too tight hugs can actually be very painful. I have many hilarious, yet painful, memories of tight squeezes or smacks on the back during a flare up. I didn’t have the heart to tell them I almost passed out from the pain. So DO keep giving hugs, but let’s keep them gentle.
Most importantly, we’re people too.
We’re still people just like you, my face may turn green from infection or you may not see anything at all that shows a flare up. I may be tightly wrapped underneath bandages, but I’m just a person too. We’ve all got our own burdens to carry and mine just happened to be chronic illness. Even though I’m feeling better now, I have a lot to work through from when I was in my worst moments. If you know anyone with a rare disease, please go the extra mile. We need it.
I also made a video about the topic you can see here on my YouTube Channel: