Things Not to Say

Recently I read an article about 15 things not to say to someone who has RA.  I was glued to every word.  It felt like - at last - someone understood my daily frustrations.  I have reworded and reshaped this article so that it suits my thoughts and current life circumstances.

The next time you see me, please do not say any of the following.  And if you have said any of the following to me in the past, do not say them again.  Good - I'm glad we got that sorted :)

Those drugs are too dangerous

As someone who has RA you don't think I already know this?  Taking medication is not a decision I make lightly.  Every day I weigh up the effect that the medication could/will have on me in the future with the my current situation.  That is, am I far happier living in the moment with somewhat less pain because of the medication, than living in the moment in excruciating pain without the medication?  Each day out of a wheelchair and off the operating table is a bonus for me.  

My grandmother has it

You know what ... your grandmother more than likely has osteoarthritis which is caused by old age.  More than three quarters of the elderly population would have osteoarthritis purely because of their age.  It's a rite of passage into senior-hood.  This statement often shows me how little the conversing person knows about arthritis and its different members of the family.

You need to exercise more

Yep, know how this one works - the more you exercise the better the joints feel and the stronger the muscles become.  Unfortunately, sometimes I can barely pull myself out of bed and walk down the stairs to give my children breakfast.  Some days my mind is so exhausted from dealing with chronic pain that the idea of exercise is painful.  And some days, my body just needs a rest.  Seriously, I'm doing the best I can.  This always follows on with the thought: losing weight might help.  Granted, this is true too.  But let me explain two things to you: RA medication can cause you to retain fluid, increase your appetite and as a result increase your weight.  Also, food is a comfort for the pain.  It's a vicious cycle.  The comfort from food is only momentary and some days my mental strength is better than others, and some days I want to jump off the Westgate Bridge just to have a break from the pain.

Have you tried ... ?

The amount of times people have read an article, seen something on a current affairs program or heard something that worked from a friend and passed it onto me, is countless.  I know that their intentions are of a good nature and they just want to assist me in any way they know how, but if I thought something really worked I would have already bought it and given it a go.  I have had RA for 33 years and I've concluded that nothing works besides medication, spa baths and red wine. 

But you look fine!

This is true ... you can't even tell that I have RA.  But, what does RA look like?  Swollen crooked knuckles?  If you looked closer at me you would see disjointed limbs, but due to years of experience I'm very good at choosing appropriate attire and wearing makeup to cover the pain.  If you ever see me without makeup and hanging about in casual clothes you can assume I'm having a shitty time.

Let me know if I can do anything for you

I often hear this one from many different people - even my husband.  And whilst I am so grateful that you are seeking out if I need assistance, I live in chronic pain.  Have you ever had pain for a whole day?  It's difficult to make a decision for myself, my husband and my children without then having to decide for you what you can do for me.  Just do anything, I'll be forever grateful.

I have it in my right forefinger knuckle

Shut the fuck up!  I have it all over my body - in every joint.  You moan about the pain you feel in a small joint - one small joint - try living in my whole body for just one hour.  Sometimes people ask me what RA pain feels like and my answer is often this: 'Have you ever been to the gym and had a really big workout and the next day you can barely move due to the soreness in your muscles?  That's what RA feels like, but times it by ten - day in day out, just on a different scale out of that ten.'

Thanks for listening, and much appreciated. xo