Don't Tell RA Patients What They Could Be Doing to Cure Themselves
I recently read an opinion article in The Guardian that resonated strongly with me as a chronic illness patient. The article, Don't Tell Cancer Patients What They Could Be Doing to Cure Themselves, focuses on patients living with cancer, but I think the issues and arguments in the piece can be applied to many other diseases--especially chronic illnesses like RA. In the article, the author, who lost his sister to cancer, writes of the additional burden his sister had to endure during her 15-year struggle with a rare form of sarcoma: the burden of unsolicited advice.
"If you’re a religious person, for the love of God, don’t tell someone with cancer that if they’d just drink juice (or take vitamins, or pray or have a “positive attitude”) that they could cure themselves," says author Steven Thrasher. "And if you’re not a religious person, for the love of reason and decency, don’t tell someone with cancer any of these things, either."
I'm in total agreement with Thrasher's statements about pushing unsolicited and often condescending advice into the faces of those suffering from serious illnesses. So many times I've had to politely smile and nod as someone assures me that if I'd only drink a certain kind of cherry juice, I could cure my RA. Or tells me that I should be taking fish oil vitamins, cutting out gluten and dairy from my diet, and getting my body stabbed with acupuncture needles on a regular basis.
Some of these suggestions sound reasonable: exercise, healthy diet. I've actually tried acupuncture many times and it didn't do anything except make my headaches a little better. Many of the countless "cures" I've had shoved at me (a lot of these involve vitamins and other supplements and strange concoctions) seem just plain ridiculous and stupid, frankly. I'm not an idiot. I'm pretty sure that if there were a cure for RA right now, I'd know about it. I'm sorry but no vitamin or miracle juice is going to cure the serious autoimmune disease I've lived with for 18 years.
What if these friendly "health experts" are only trying to help? What's wrong with that? It's not the kind of help I want--believe me. If you really want to help me, there is a long list of things you could do other than forcing some bogus treatment on me or making me feel like I'm not doing enough to take care of myself.
I'd love for someone to go shopping with me sometime and genuinely offer to hold my bags. I'd also love help with doing the errands that never get done because I'm too tired, in too much pain, or don't feel well. But what I'd really love is for others to just be supportive friends. To listen with kindness and patience. To be understanding, non-judgmental, encouraging, and simply there.
Dispensing unsolicited health advice to someone with a chronic or terminal illness (or any illness) isn't really a way for people to help the sick person, but to help themselves deal with the harsh reality of sickness and their own mortality. It's like picking on someone else to make yourself feel better.
"Don’t tell a sick or injured person what they should do, because it’s a sneaky and harmful way of dealing with your own fear of death," says Thrasher. "You’re saying, tsk tsk – I wouldn’t let this happen to me the way you’ve let it happen to you."
"Giving advice to people...blames the sick person for your discomfort with their reality and shifts any accountability you feel back on to them," Thrasher adds. "We have ethical responsibilities to the vulnerable in our communities – and we find excuses to avoid them."
It's understandable to want to avoid sick people. Sickness, disease, pain, anxiety, depression--it's all scary. Sincerely engaging with those with RA who are suffering instead of dumping useless, insulting advice on them takes a lot more time, effort, and courage. And that is exactly what patients need--not some stupid copper bracelets or an expensive juicer.
It's not my fault that I got sick, so please don't make me feel like it is. Also realize that I'm an intelligent, well-informed, and determined person who is doing everything in her power to successfully manage her disease. When you offer up some flimsy, ridiculous piece of advice, it feels like a slap in the face for all of the hard work I have put into taking care of myself and my RA for all of these years.
How often you do experience an unexpected boost of energy?