Advice…good advice. Unsolicited, well intentioned, good advice. When you’re chronically ill, you get a lot of good advice. Most people mean well, and want to help. But sometimes people just cannot accept that some diseases are, in fact, incurable. And sometimes people get sick, even if they’ve done everything ‘right’.
They’ve never heard of my illness. They probably can’t spell it. They don’t know how it affects me, and they don’t ask. They just assume that ‘arthritis’ means I have some mild aches and pains. And they know exactly how to cure that.
Not improve my quality of life. Not relieve some pain. CURE that!
Which is pretty awesome, because the very best medical research minds in the world haven’t figured out how to cure inflammatory arthritis yet. Certainly not Mixed Connective Tissue Disease, which is so diverse that telling someone you have Mixed Connective Tissue Disease doesn’t really tell them anything at all about what symptoms you are experiencing. So it’s pretty perceptive, as well very clever, to be able to CURE it.
Still, they mean well, don’t they? So I should accept their advice with grace and just move on. Shouldn’t I?
Maybe yes, maybe no. How will they learn what inflammatory arthritis, rheumatoid arthritis, mixed connective tissue disease, lupus, spondylitis…how will they ever know what these diseases really are and how they affect my life, if I don’t educate them?
But educating gets tiring. It’s hard work raising awareness, one person at a time. So sometimes I just have a giggle at the weird and wonderful (and conflicting) advice I receive regularly. Sometimes totally opposing advice, from the same person within a few days.
Here’s a sample…
You just need to push through the pain! You need to develop a higher pain tolerance!
You should rest more. The pain is telling you to rest your body. If you rest more, you’ll be fine.
Try eating this. It’s an anti-inflammatory super food. (Regardless of the fact that I eat it all the time)
Don’t EVER eat this! Not ever. It’s the cause of all your inflammation. (Regardless of the fact that I never eat it.)
Have you tried this medication? You just need to find the right medication and you’ll be fine.
You should stop all that dangerous medication. Big pharma is just making a profit off of you, keeping you sick. If you stopped all those meds, you’d feel much better.
What about natural supplements? Have you tried these? I saw it on Dr Oz. It cures everything.
Those supplements won’t help. You need to eat all organic! If you work on getting your nutrition right you’ll never bet sick.
You just need some rest. You’d be fine if you just got a good night’s sleep and relaxed more.
You sleep too much. Maybe if you just got out more and stopped dwelling on it, you’d find you’re not so sick after all.
You need to exercise more. My grandmother does yoga and she’s 86 and there’s nothing wrong with her.
You do too much exercise! You need to rest and give yourself time to recover and the pain will go away.
You’re just depressed. Have you tried an anti-depressant?
You look great! So well and happy! Are you sure you really have that disease?
Can’t you just take a pain pill?
Don’t take those pain pills! They’re addictive!!!
My aunt’s best friend’s sister’s husband’s work colleague had that. But she runs marathons.
My aunt’s best friend’s sister’s husband’s work colleague had that. But she died.
You just need to take your mind off it, and stop talking about it so much.
You just need to talk about it, get it out of your system. Do you understand the mind / body connection? The root of all illness is bottling up unresolved traumas and conflicts from your past. Have you seen a holistic counsellor?
We never see you anymore. Maybe if you got out more you’d be better?
I saw you out the other day, and you looked so well! I’m glad you’re better now.
Have you tried…acupuncture, massage, Reiki, Bowen therapy, chiropractic, water therapy, meditation, apple cider vinegar, coffee enemas, gin soaked raisins, green smoothies Japanese sour plums, going Paleo, going Vegan, going vegetarian, going on a water fast, going to that place in France where the water cures everyone? Or maybe try Tibetan moon rocks wrapped in Javanese jellyfish tentacles ground up into a flour and baked into a delicious gluten free bread?
Have you tried…?
Yes. Yes, I have tried that. I’ve tried all of that. I really have. Because no one wants me to get better more than me.
So I thank people for their kind thoughts and good wishes, and stick with my doctors’ recommendations for my little band of incurable illnesses.
Because that’s the bugger about incurable illnesses. They are, currently, incurable. As in, there is no cure. And there are plenty of us who live with incurable diseases. And rather than looking for magic cures or miracles, we choose to do exactly that – LIVE with our illnesses. And live the best life possible.
Thanks Rochelle 🙂
And that sums up.tje story of my RA CRPS GCA life! Thanks for putting it into words
Is GCA Giant Cell Arteritis Jeannette? That’s a jackpot of painful diseases you have there :(. I can only imagine the well meaning advice you’ve received. I hope your medical team is getting things you through this latest hurdle. Thinking of you Xx.
Terrific and spot on. Having these diseases that have been tough to treat for 30 years leaves people perplexed as to why I am not” better”. Ad you said: noone wants me to get better more than I do.” I hate letting people down. The guilts don’t serve any helpful purpose but they still sneak their way in.
Yes Julie, sometimes its hard not to let guilt, anger, frustration…all manner of negative emotions get on top of you. 30 years is a very long time to be ill and in pain. I think possibly one of the biggest areas where awareness is needed is that, while medical science is amazing, there are still a lot of diseases that can’t be cured, and often can’t even be well managed. Most people think in absolutes – if you’re not dying, why aren’t you better??? And it can really hurt sometimes.
Terrific and spot on. Having several autoimmune diseases as RA,sjogrens cinnevtivevtidsue overlap diseases for the past 30 years makes people wonder why i can’t be better and why I can’t push myself through . Ad you said: ” noone wants to be better more than me”. The guilts sneak but they serve no purpose bit like to play havoc anyway . Thanks for a very insightful blog.
Correction: Connective tissue overlap diseases.
oh….my gosh. I’ve heard many of these. And there is a plethora of people on youtube that swear (I tell you they swear!!) that they cured their RA by means of vegan/grains/paleo/homeopathics/particular exercise programs/vitamin rituals/crystals and rikki Pick one, any one. And most reject completely the idea that it may just be remission…believe me I tried and got pounded. Good post!!
oh I know! Im happy for anyone who finds success, but there are so many scams. and even if one person was ‘cured’, that doesn’t mean that whatever they did will work for everyone! So many people happy to cure me for the very reasonable price of $49.95…
So much YES.
When I was diagnosed with type 1 diabetes my dad said something to me that I still find funny. My dad understood diabetes and he knew full well it was not something I or anyone else did to cause diabetes.
With that background, my father looked at me with all seriousness and gazed at me while I discussed what I had been told by the diabetes educator with my mother (she was a long time and very ill, person with type 1 diabetes). My dad’s comment,
“boy, you need to get that fixed”
Then we had a fantastic laugh. for years whenever something came up healthwise with either of us we would close each conversation with the same words.
I believe people who have lived with chronic conditions and have been told by well-meaning but clueless people that this okra water or that hand full of nuts would fix us, get that comment. yes to the uninformed it seems so simple. But we know it is so very difficult and in our case impossible.
I love it Rick. You and your Dad clearly have a great relationship and attitude!
The running joke in my little family is ‘why don’t you just meditate’ because a member of my extended family, over dinner in front of my kids, suggested that daily meditation practice would cure me. My kids waited to see if I would explode, cry or handle it with grace. Thankfully it was the latter, but now its the standard response when something goes wrong to ‘just meditate’. My car transmission blew up recently, and my son suggested I should go meditate and that would fix it. Makes about as much sense! and its very funny (to us!!!).
These little rituals get us through…help us laugh through the tough times. And with diabetes I’m sure you have the added bonus of people not understanding the difference between type 1 and type 2. A whole world of fun there too, I’m sure!