Rheumatoid Arthritis and ‘you must want to be sick’

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autoimmune arthritis

yes-autoimmuneHow often do people tell you, either directly or indirectly, that your disease is your own fault?

It’s one step down from “it’s all in your head” but it’s definitely on the same track.

How often has someone told you that your arthritis is the result of bad lifestyle choices?  Seems to me to be similar to type 1 diabetes, and type 2 diabetes.

Type 1 is an autoimmune disease.  Children can get it.  The cause is uncertain.  The disease can be managed, but there is no cure.

Type 2 is a largely a ‘lifestyle’ disease.  It can often be controlled with dietary changes and exercise.

It is essentially a completely different disease, but people with Type 1 diabetes are often blamed for their disease, and told if they would just exercise more, or change their diet, all their problems would be resolved.

Does any of this sound familiar?

It’s a bit like the osteoarthritis vs inflammatory arthritis situation.

Now, osteoarthritis is painful.  Absolutely!

But its not a *systemic* disease.  Osteoarthritis does not affect the heart, lungs, liver, kidneys, eyes…so many other organ systems.  And you don’t take heavy duty medications for osteoarthritis.  People do not die from complications of osteoarthritis. Their marriages don’t end over it.  Their careers aren’t typically destroyed because of it.  It is NOT a life-altering, life-limiting disease.

But when you say ‘arthritis’ this, osteoarthritis is what most people think of.  And instantly start giving you helpful advice.

About diet.   About exercise.  About supplements.

Of course some of these will help some people some of the time.  But the general consensus out there in healthy-land is that *all* you need to do is to is exercise more, eat better food and take some fish oil and you’ll be just fine.  And if you don’t do that, you obviously WANT to be sick. You are CHOOSING to be sick.

Its. All. Your. Own. Fault.

I also want to make it clear that there’s a big difference between effective treatments, and causation.  Changing your diet may help your RA.  It helps lots of people.  It’s worth a try.

That does NOT mean that a bad diet CAUSED your RA.

Exercising may help your RA.  It helps a lot of people. It’s worth a try.

That does NOT mean that a lack of exercise CAUSED your RA.

Taking supplement or vitamin whatever may help your RA…you get the picture.

I could even say methotrexate may help your RA.  It helps a lot of people.  Its worth a try.

But none of us think that a lack of methotrexate caused our RA!

Effective treatment does NOT equal causation.

I tend to try anything that has a bit of evidence behind it.  That’s me.  But one of the problems with inflammatory arthritis is that it’s a heterogenous disease.  Which basically means differing causes, and differing levels of severity for different people.

Put simply, there is mild RA and severe RA and everything in between.  What works for one, does not work for another.  One size does NOT fit all.

And what caused my Rheumatoid Arthritis is, as far as the best science can tell us, a combination of my genetics and my environment.  And possibly an emotional trigger (RA often manifests after an emotional upheaval).

Was it my fault? No.  Definately not.

8 COMMENTS

  1. OMG- this describes nearly every conversation I ever had explaining I have RA – here is a list of what kind people have recommended- Pilates, yoga, yoghurt, fish oil, shark fin, aspirin, spirit healing, swimming, running, low fat, low carb, low protein, high banana, chiropractor,meditation, spirit healing and standing on one leg while kissing a baboons ass!. Ok not the last one but in the end people make you feel that it is your fault. I have survived cancer, a stroke and now living with RA, but surviving people’s total lack of understanding about RA Is the hardest. I am thinking of wearing a t- shirt that says ” my rheumo told me I have the worse case of RA he has treated in over 20 yrs” My husband says be patient with them, but if I have one more gym bunny yummy mummy at parent group recommend ZUMIA- I am likely to break her like a twig., and use her as a tooth pick!

    • HI Sarah, you made me laugh and laugh! (not and easy thing to do today!!!) Standing on one leg and kissing a baboon’s ass…LMAO. You have truly had a rough road, and you are incredibly strong to have survived all of that…and now RA. Your husband gives good advice, but I must admit, I’ve lost patience! Its kindof comforting to know that you’ve suffered so much, and that you say the lack of understanding of RA is one of the hardest things. Helps to know its not just me…I’m not just ‘needy’ or demanding. I have recently found a friend who is very supportive…caring people are out there. I hope there are some out there for you.

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  2. I felt like you were reading my life! I did everything but get up and cheer for you!!! I also have R.A. Diagnosed a few months ago – after ten years of being told its Fibromyalgia and that its my weight, anxiety, in my head and basically get over it! Thank you for sharing. I loved it.

    • June, I’m so glad you have a proper diagnosis now…ten years is way too long! Common story tho, sadly. I’m betting your seronegative and cos your bloodwork is fine, they just don’t pay attention. I hope you have a doctor that is going to help you now! What meds are you on? All the best to you, and thanks for you comments 🙂

      Arthritic chick signature

  3. Hi Arthritic Chick,

    I posted a comment which has not been approved by you, can you let me know what i did wrong so that i do not make the same mistake. Cheers Sarah

    • I’m so sorry Sarah, I don’t know which comment? I love your comments – I’m just going to go check…I probably just missed it?

      Arthritic chick signature

  4. LOL…yeah I was told by someone that all my aches and pains were caused be me wearing high heeled shoes and all I needed to do was were more “sensible” shoes.

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