Sue lives in Saco, Maine, with a diagnosis of Rheumatoid Arthritis. Realizing that she is not alone in her experience of chronic pain, she started the Chronic Pain Support Group of Southern Maine.
Be sure to see selections from our Portraits of Pain series “Heal/Tell” at the Biddeford arts organization Engine, at 265 Main Street in downtown Biddeford. The exhibit will open Friday, March 8 from 5:00 p.m. to 8:00 p.m. and will run through April 6.
Before I had my shoulder replaced in 1994, I couldn’t sleep for more than two hours at a time without being wakened by the pain. The pain doesn’t register with you after a while—it envelops you and becomes a part of your life. My RA doctor is absolutely fabulous. He knew I had RA the minute I walked in. What I like is that we’re equals in this. He’s my partner, I’m his partner—together we cope. If he doesn’t know the answer he’ll research it for me. I never feel he’s rushing me out the door.
Chronic pain is hard for people to understand, and that’s why I started the group. I got permission to meet at a local church, and put out posters and PR notices. It surprised me there were so many people living with pain. Every story was different, but they all nodded their heads to show they understood what the speaker was going through. The group freed me to love my friends for what they were—they didn’t need to deal with the issues of my pain.
I’m lucky it’s not in my hands—my rheumatologist caught it before it got that bad. I’m pretty much in remission. The pain I have now is from damage done before the RA was diagnosed, in my shoulders and knees.
The thing that really frustrated me at first was people telling me I should be taking bee sting therapy or wearing copper bracelets. I have the disease; don’t you think I’ve done the research? If there’s research that backs it, and it’s not too expensive or too invasive, I’ll try anything. Different things have helped and some have not.
I just decided what was important. Money is an important issue when you’re faced with joint replacements. We did afford it. It means not having a vacation, but some people just don’t have the money to do it. A friend is waiting yet another year because she doesn’t have the money, meanwhile her knee is deteriorating and her health deteriorates because the pain keeps her from exercising. I pay taxes, too. I know the money has to come from somewhere. I don’t know what the answer is, but I think health care should be something everyone has a right to have.
I should ride my exercise bike more, but I do walk three days a week with a friend of mine. We walk about two miles. Exercise is really key in a lot of chronic pain problems. You need to do what they tell you to do at PT—if they say do the exercise three times a day, do it three times a day because that’s what’s going to help. A physical therapist suggested that I get tested for RA. I thank him for that to this day. I was surprised, looking back, that he recognized the symptoms for RA—my doctor did not.
Do your own research but don’t believe everything you read on the internet. You have to be a partner in this deal—some don’t want to put the work in or think they aren’t capable. But you know your body better than anyone else. The doctor knows what the tests are saying, but the doctor’s got to hear from you.
You can’t just say it hurts.
Heal/Tell is a series of narrative and portraits by Cathy Plourde, Director of Add Verb Productions and Holly Haywood of the University of New England.
Learn more about the 11th Annual UNE Interprofessional Spring Symposium: the Science of Pain and the Art of Healing, April 4, 2013, Biddeford Maine.