Why does everyone think they can ‘fix’ me? Why, when I tell them I have Rheumatoid Arthritis, do they instantly launch into their own personal cure? And why do they think that’s OK? Do people with Eplipsy, or Diabetes, or Cerebral Palsy, or any number of other chronic illnesses get this response too?
It comes from friends. It comes from family. It comes from complete strangers. It comes from everywhere.
Yesterday a contractor came to my house to measure up and quote on new carpet. I didn’t know him. He was there to provide a service. A quote. I need new carpet.
My illness is usually invisible, however I do sometimes limp. I have heat packs strapped to me. There are Canadian crutches leaning in the corner. I move slowly, I don’t bend well. It’s not that invisible if you’re paying attention.
He asked me what was wrong with me. No problem, I don’t mind the question.
I told him Rheumatoid Arthritis.
He immediately started telling me about his (osteo) arthritis, and gave the usual ‘You’re young to have arthritis’ response.
Most of the time I use this as an opportunity to educate. One person at a time. I will never be a good public speaker, or able to advocate in that way. I just don’t have that confidence. But I can explain to people I meet, one at a time, and slowly spread awareness.
I informed him that Rheumatoid Arthritis is an autoimmune disease, and it affects people of all ages, even children. That it is a systemic disease, and sometimes very painful and disabling. And completely different to osteoarthritis.
As often occurs, he didn’t listen to a word. He kept talking. About his chiropractor who fixed his lower back, which must have been arthritis. (Nothing I like better than someone comparing their self-diagnosed ‘arthritis’ to my serious autoimmune disease).
And he then continued for the rest of the time he was measuring up the rooms in my house, to sing the praises of his chiropractor. And pressure me to make an appointment. I again explained to him that, when severe, Rheumatoid Arthritis is not just about joints. That my disease has affected my heart, my kidneys, my lungs. That I am losing my eyesight. That I have mild inflammatory bowel disease, as a related condition. That I have nerve damage, that my neurologist is not sure if it’s the RA affecting my nervous system, or if I have early Multiple Sclerosis (MS). That I have had a stroke, and it may be due to my disease, or it may be due to the medications I need to take. That these are very strong medications that suppress my immune system, and come with risks and benefits. That chiropractic treatment is not a cure for autoimmune diseases.
He wasn’t deterred. In fact I don’t think he heard me at all. He just continued talking. He then told me about his friend who had MS who had such a bad shoulder, that she couldn’t use her arm at all. After three treatments, she is now fine!
At that point I had to give up. He wasn’t going to listen. People need to believe that every illness can be cured. And they actually believe they are helping me!
Most of the time, I just let it go. I tried to educate. That’s all I can do. But sometimes it still makes me incredibly angry.
When people suggest I try some nurofen, because it fixed their elbow right up! And they give me this look as though I’m not too bright, and why in the world didn’t I think to try that?
Even better is the positive thinking brigade. I have one member of my extended family who continually tells me that all I need to do is to ‘visualize a healthy life’. With yoga. If I believe that my pain will be gone, it WILL BE GONE!
Doesn’t matter to him that I have a biological disease, there is a measurable pathology, a disease process, a prognosis, that no amount of positive thinking can cure.
Don’t get me wrong, I do believe that a positive attitude is very important. I live a much happier life because I tend to look on the bright side. I try to face every challenge with positivity and hope. I focus on what I can do, rather than what I can’t. On what I have, rather than what I have lost. There are certain realities that I can’t ignore, however. Like when I can’t walk because my hips won’t weight bear. Or when I can’t drive my car, because I can’t grip the steering wheel. Or when I am in too much pain to do anything but lie on the couch and breathe and meditate. None of this can be taken away with a positive thought!
I can have a happier life because of my attitude. I can’t have a healthier life (in terms of curing my disease) though.
People confuse healthy and happy. I am happy, for the most part. I am never healthy.
No amount of positive thinking can change the fact that my immune system is destroying my joints, and some of my internal organs. That I am physically disabled, and that none of the available treatments work for me.
My family member’s assertion that I can ‘think myself better’ is utterly ridiculous. If it were true, no one would ever be sick. Hell, no one would ever die! We’d just visualize the diseased body part cured, and voila! All good for another few decades. Heart trouble? Just think up a new one. Lung disease? No problem. Just visualise two healthy lungs. You’re all good. That’s the equivalent of what he is saying to me when he says ‘visualise strong joints that are pain free’.
And it never occurs to him, nor the countless strangers who have told me to eat gin soaked raisins, go gluten free, eat Japanese sour plums, or soak in mineral salt springs, or all manner of far crazier ideas, that all of this is deeply insulting and offensive to me.
That what they are saying, in effect, is that my disease is my own fault. That I CHOOSE to be disabled by my disease. That I CHOOSE to be sick. Because I won’t go to their chiropractor and pay $200 an hour. (Difficult when you are living on a disability support pension, and are a single mother raising two teenagers, one of whom has a disability of his own). Or I won’t follow their diet (because I tried that already). Or I won’t go see their naturopath.
And the kicker is I’ve usually tried everything they suggest. I’ve almost run out of medical options, drug treatments. But I’ve also tried many alternative therapies. Acupuncture. Functional medicine. Dietary changes. Supplements. I exercise, to the level that my body will allow. I work on my health very hard. And many of these therapies are beneficial to my general health. But they make not one iota of difference to my disease progression, or the constant, severe chronic pain that I live with daily.
And being told in not so subtle ways that this is all my own fault, because it is within my control to fix it, is just cruelty. And the height of arrogance and rudeness. And no, it doesn’t help.
And in this instance, it means I won’t be buying new flooring from this man. He has lost a very large job, because when he sent me the quote, he couldn’t help but also include his chiropractor’s details. Along with a little note on how sure he is that I will be all better in three treatments.
Because everyone’s an expert. And everyone knows how to fix me.