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

By: Melissa

Melissa — Mon, 07 May 2012 14:32:41 +0000

This is one of the best descriptions I have read so far. The problem is that people see us on the few functioning days from chemo or high dose steroids, and they see someone fine. They don’t see the couch days or the I can’t get out of bed days. People would rather pretend all is well than to believe there is a horrible genetic, painful disease so common that could affect them or someone they love. Its not cancer but a much slower, deadly, painful disease that affects your entire body. Only the strongest of mentally sane people who have moderate to severe RA can live with this disease, and that’s only with a good support system. Keep fighting!

By: Sandra

Sandra — Wed, 11 Apr 2012 19:36:35 +0000

I think you did a very good post of how RA feels. Having RA also means doing the things you used to do on the days you feel halfway normal and then paying for it the next day.

It means trying to roll over in bed at night and trying not to cry out. Or trying to get up off of a couch in less than 5 minutes while your knees are screaming out in pain and you’re trying to hold your back together.

It also means not being able to do things in retirement with your husband that were once easy to do. No hiking, no boating (because every small wave sends pain through every joint), no long walks, and much more.

It also means trying to ignore the commercials and ads that tout all the expensive new medications that “get you back to your old self”. If only. And ignoring those who say “Why don’t you try that?” and “Why aren’t YOU back to normal?”.

Thanks for your website. It helps everyone with RA.

By: Karen Rae Smith

Karen Rae Smith — Wed, 02 Nov 2011 04:04:20 +0000

I truly appreciate your writings. I read them and instantly think, oh thank God I’m not crazy! Because very often with this disease, I’m not sure! The constant pain is maddening. The lack of compassion by the public at large makes me sad, mostly because it’s what I expect when I leave the safety of my home. So, I do so rarely and with caution.
You have such a way with words, adding wit and information. Some how, like a good cook, you mix just enough of the right ingredients to make it all work just perfectly here.
Again, thank you so much & please keep up the good work!

By: Kelly Young

Kelly Young — Sun, 23 Jan 2011 23:06:19 +0000

Hi Cathleen. My kids and my best friend are who I think of when I read your words – they saw me go from 100 mph to 0 – so they understand and believe. Others, no they don’t.
Good luck with your treatment.

By: Cathleen Simon

Cathleen Simon — Sun, 23 Jan 2011 18:49:42 +0000

Thank you for this site Kelly. Though I have a doctor who listens and understands my pain, he goes through with the prodding and moving joints. By the time I leave I am in so much pain and exhausted.

I am currently on 6 different medications as we are still trying to find what works. Methotrexate has left me several bald spots, I still have sleep problems, nauseated sometimes, fever, chills and now on narcotics to help control the pain.

All of your symptoms are mine and my poor dog doesn’t understand when I have to make her quick licking because her tiny tongue hurts me so much. I was diagnosed years ago with TMJ after all other doctors said it was in my head. After reading your article I wonder if I had RA clear back then.

I am glad to learn more by your site, as I research all the time for more information on foods and drugs to help. Your site has helped me know there are more people than I can imagine out there suffering and being misunderstood. Fortunately my family understands as they saw me go from going 100 miles per hour to sometimes 0 miles per hour.

Bless you,
Cathleen

By: Kelly Young

Kelly Young — Tue, 10 Aug 2010 02:14:43 +0000

Dear Stephanie,

I’m sorry you are hurting. I’m glad you found a better doc. Seronegative RA doesn’t hurt any less than any other RA. The Rf test does not determine disease activity or pain levels…

:heart: My heart goes out to you about feeling like you’re whining & keeping it to yourself. I know how you feel. It really would be best to have people understand RA better so we didn’t have to do that.

By: Stephanie

Stephanie — Mon, 09 Aug 2010 21:31:51 +0000

Kelly
I find myself thinking while people are talking to me ( kind of like an out of body experience ) /What is wrong with you people. Do you think I like asking for help? I hate it.!!!I find that I don’t want to say anything anymore.If friends say hi and how are you, I say fine. But what I really want to say is that my hands are hurting so bad today, because I spray painted to chairs yesterday and ended up pushing the spray with all my fingers. It is just that I feel that I am whining. I think most of all I would like my husband to understand better. It is almost like he is running away from what I am saying to him. So to make his life better I don’t talk about it much either.
I have found a new Rhuemy and I like her alot. She has already explained my sero negative arthritis much better than my first. She did tell my I could hurt as bad as someone with positive RA. So I don’t think I am loosing my mind. It is hard to be cheerful when you hurt. We live in a very humid area and that bothers my arthritis more than winter. I really don’t want to complain but I don’t like being brushed off as if what I have to say is not important.
Whew ….. that’s enough whining for the day.
God Bless you all,
Warmly, Stephanie :brokenheart:

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.