Comments on: What Is it Like to Live with Rheumatoid Arthritis? Part 3: Communication Failure

By: Kelly Young

Kelly Young — Tue, 29 Jun 2010 12:33:22 +0000

Dear Kathryn, I wish I could make others be more cautious as they should, but I can at least tell you that I understand. The same things have happened to me numerous times. It shakes me up physically and mentally to be knocked around. At the airport w/ my daughter, a man ran into me hard w/ his mother’s wheelchair. They knocked me down. I could not do anything fast. They were arriving not departing, but ran off toward the car barely looking back over the shoulder. I said allowed: “I’m hurt. I have a disability.” They huffed.

I say all the time, I hope as we create awareness about RA, this will improve.

By: KathrynGray

KathrynGray — Tue, 29 Jun 2010 12:15:51 +0000

I had an email yesterday not relating to RA and one quote I found appropriate was ‘I know God won’t give me any more than I can handle – I just wish sometimes he didn’t trust me so much’. I can sure relate to that.
Your post about being treated badly by people in shops certainly hit a nerve (just in case there’s a nerve that’s not already hurting). I am outwardly far more tolerant than I feel on the inside sometimes and considered it a personal failing for many years. However, I try to be more tolerant with myself which seems to help sometimes.
I try to shop on a Friday and two weeks ago – at the checkout two senior citizens were kindly pushing their trolley into me trying to pass. I said nicely ‘I’m sorry I can’t move quickly I have a disability’ – the reply ‘Well we do too so we’re equal’. I have to admit that it hurt, I was angry and simply said lamely ‘I’m only 44′. The weekend saw different circumstances still ending up with me being hurt (physically). In the newsagents it was really busy so my mum and I stood out of the way allowing the crowd to settle. Suddenly I’m lurching sideways as a tall, stocky teen knocked me sideways and almost over. As soon as I saw him I realised that he was unwell – his carer ? mother said – half heartedly ‘He’s autistic – he can’t help it – just let him in and he’ be fine’. I really do understand how difficult it must be to supervise a teen with this illness. But later I’m thinking – if his carer can’t stop him from being physicallly aggressive then maybe it’s not a good place to take him. I know this sounds mean (it’s not meant to) but it’s not ok for others to be hurt in the process of socialisation. All I could say as I’m lurching sideways is ‘I have a disablity too’ as my balance is not good either. I can’t afford to be injured and neither incident gave me any pleasure, but left me feeling so much less useful and naturally in pain.
This was a rather exaggerated day but every time I go shopping – someone glares, says something or stands by and huffs because I’m not leaping out of the way. It really bugs me and then later I get sad, realising whilst I am much more fortunate than many with my RA and spinal issues – I am not quite as fortunate as a ‘normal 44 year old’. It really helps this site – I feel like I’ve found my place.

By: Kelly Young

Kelly Young — Fri, 04 Jun 2010 13:59:54 +0000

Thank you, Mari. I don’t know why it’s so hard.

By: Mari

Mari — Fri, 04 Jun 2010 13:43:19 +0000

THANK YOU! Very well said!!!

By: Alice

Alice — Sat, 13 Feb 2010 19:01:52 +0000

Gosh! Here I am once again being called a HYPOCHONDRIAC, guess I’ll just learn to live with that one! LOL I mean in reality it doesn’t hurt near as bad as my RA and all the other things that I’m too tired to type, if that’s all they’ve got then they need some more”edumacation” as a sweet friend of mine says. When God made Solomon King He asked him what he wanted and Solomon said “Wisdom and Knowledge”. I guess ol’ Solomon was a HYPOCHONDRIAC too huh! Knowledge is power and that’s what they DO NOT want us to have.

By: Hurty Gertie » What does my PsA feel like?

Hurty Gertie » What does my PsA feel like? — Sat, 13 Feb 2010 00:43:26 +0000

[...] without the writings of Kelly Young, before my diagnosis I had a bit of an idea, from a few diagnosed RA friends, what their days were [...]

By: Kelly Young

Kelly Young — Wed, 10 Feb 2010 14:17:22 +0000

Kay, sorry, no way I can know what’s going on in your neck. But, I can say if it’s bothering you: Get it checked out. It could be RA or OA or a number of other things.

If you do have RA, and have spine symptoms, chiropractic adjustment can be risky. Neck MRI’s are hard, but if it gets painful, that is one way to try to find out.

Same with hot flashes: too many causes for a guess. If it continues, I encourage you to keep pursuing to find an answer.

By: Kay

Kay — Tue, 09 Feb 2010 16:45:09 +0000

What causes that popping and cracking at the base of the skull? It sure intimidates me too. My rheumatologist said we don’t worry about popping noises without pain. And how about hot flashes? I never know if they are from RA or methotrexate but they are overwhelming at times. Thanks for sharing so openly. It is very helpful in many ways.

By: Kelly Young

Kelly Young — Tue, 09 Feb 2010 15:14:06 +0000

I know how you feel about the “self absorbed” comment. Ouch.

Yesterday, I was reading articles about how people deal with chronic pain and I saw a definition of a hypochondriac: it said you are one if you talk about your illness, and read about it a lot, and research it, and think the docs might not get it, and think that no one understands your pain. That was a serious scientific website. That definition makes almost everyone with RA a “hypochondriac.”

By: Kelly Young

Kelly Young — Tue, 09 Feb 2010 15:07:14 +0000

Thanks, Bert. Great points especially about the “anti- depressant” comments and our not saying anything about pain most of the time.

Hey! I wonder if we could say something about the pain more often, if we’d cry less when it gets so bad…

Sometimes it hurts so bad we do have to cry. But tell that to those who write the studies I’ve been reading about pain perception. Aggravating.