Medicine is a practice. Scleroderma, Sarcoidosis and many diseases are not well know by many doctors. It’s important to find a doctor with experience with a chronic illness like scleroderma. If you have a doctor in your area, wiling to consult or allow care management by a doctor who has experience, you have hit pay dirt- but that’s a whole other post.
So we have doctors working with us, as well as those who love us who aren’t doctors and couldn’t pass an audition to play one on TV. It doesn’t matter, chronic illness or not, we get a lot of unsolicited advice and some of it is just hilarious.
When I was pregnant, I had heartburn. According to my Aunt Enes, I was getting heartburn because my baby had hair. It couldn’t be the baby kicked my stomach around like a flat, acid filled soccer ball. No. My baby had hair. Which I guess is rare for mammals?
Okay, bad example because she gave no advice, just her opinion, but it’s always a great story. She tells me what she believes, because she cares. Don’t we all have people who tell us things because they care. Yes, we do. Even you, J.D. Salengers -if you lock yourself away, your inner voices will get to you, eventually.
Here is a great example of some bad advice I received in the90’s.
“You know Karen, you should try cayenne. It’s great for circulation”.
Yes, it sure is. Not only is it great for circulation, it’s a great way to exacerbate reflux, a common related condition to scleroderma. Oh yeah. Good times. Forest Gump once said to Jenny, “Sometimes, there just aren’t enough Tums.” He was right about that. Yep.
Out of all the advice and recommendations we receive, no advice should be listened to and tried more than the advice of our own doctors. Sure, we all run into quacks, but we shouldn’t be discouraged. Most doctors got into it because they wanted to help people. Some loose their way, but many truly want to do their best.
Listen to fellow patients, talk with friends about your treatment if you are about to try something new. Go over the risks and benefits. ALL medications and treatments have side effects. You will never know how they will effect you, if you don’t try them. But before you do try a new treatment, do your homework. Seek out fellow patients and learn from their experience. Know what you are about to put into your body. A chronic illness has a great way of making people feel helpless, but we are never helpless. We may not get the outcome we want, but we may get the outcome that works, even if it takes a few adjustments.
So, if you skipped to the end:
We all get lots of unsolicited advice. Of all the advice we get, the source we should listen closest to is our doctors and medical practitioners.
Yes, we have to try many things before we find what’s works and you’ll ask, “What am I, a guinea pig?!
Don’t despair. Here is Randy, in “Honebadger Narrates The Guinea Pig” – Oh how precious!