Everyone’s an expert in how to cure my Rheumatoid Arthritis

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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.

4 COMMENTS

  1. I know your question in the first paragraph was rhetorical but the answer is yes. I have had so many people tell me how to cure my diabetes and on top of that people questioning me as to whether or not I should be eating or drinking something and because I am overweight to boot well don’t I cop it if by chance someone sees me eating something that may not be all that healthy.
    As you know I also have RA and most of the time I just try to put peoples comments down to ignorance or they are trying to be helpful even though I do know that they really aren’t. Even if people don’t understand the illness you have our society has developed a superiority complex………everyone seems to think they know better than everyone else………and its like they have to prove it at every opportunity possible.
    In my opinion and experience most people don’t give a rats arse what is ‘wrong’ with you. They only ask out of some sense of social duty and don’t really want or care for the answer, what ever the answer maybe. That all sounds very negative but I really don’t mean it to be. I am just over trying to explain things to people who really don’t care anyway.
    It hurts the most when it comes from people who really should know better…….like family (and a lot of mine have a medical background) or close friends (I’ve now lost most of mine I spose because I expected more of them with regard to their attitude toward me having this illness).
    In general I have added to the old adage of what not to discuss in polite company……..Never discuss politics, religion or chronic illness! However that’s just me………..I don’t suffer fools well and I am sick of feeling sad and hurt or having to justify myself.

    I think you have addressed this subject wonderfully.

    • You don’t sound negative at all Sue. Just honest. It’s the truth and people ARE superior. And arrogant. And ENTITLED! And so very sure that nothing like this could ever happen to them, because THEY do everything right (and by inferrance you/we do everything wrong). People should know better. The fact is they don’t care to. Some of my extended family are fitness professionals and believe that everything can be cured with dietary changes and yoga. One even defriended me because I argued that this was incorrect and some diseases are NOT lifestyle induced. No great loss, let me tell you! I too have lost most of my friends. I’m to slow to keep up with their world, and they don’t understand mine. I used to get very lonely, but I think its actually easier this way now. Take care of yourself, Sue. The judgement is the last thing we need, on top of everything else.

  2. I could not have said it better. I do worry that some day I will lash out, quite embarrassingly, when someone tells me to given up gluten!! I have psoriatic arthritis, so it also causes lovely scaly patches. I love how often I am told to use coconut oil and it will take it right away. I want to wear a sign saying “I apply coconut oil 3X daily just to move my fingers without the skin splitting”.

    I just found your blog. I am looking forward to reading it all! Please forgive that I will likely be commenting a lot on old posts 🙂

    • I’d love to hear your comments. I’m so sorry that I didn’t respond sooner Sarah. My notifications weren’t working and I looked at the comments today and found almost 100! So Im catching up. I sure wouldn’t blame you if you DID lash out. But of course the you’d be considered the bad guy, not the ignorant so and so who knows more than you about your own body! Coconut oil is the current superfood, ingredient, live saving fixer of everything. I wonder what it will be next year? I get a lot of ‘you should just meditate and you’ll find you’re not sick at all’. Yep. I’ll keep that in mind…. *sigh* I hope you’re doing OK. Psoriasis is just a whole extra level of pain to deal with. Best of everything to you xx

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