I don’t tell people I have arthritis because I feel they will completely misunderstand and think I have Osteoarthritis. So, if I’m going to tell someone, I tell them I have an auto immune disease and if the conversation continues I tell them how it affects my body.
Sadly it’s all too often a case of people not understanding something because they haven’t got it themselves. If I say to someone it came on suddenly overnight, as mine did, I all too often get the response “that’s not how arthritis starts!” Yes it is! Grrrrrr. I have the same thing with bipolar as well, just to make more fun. I tell them I have bipolar and they seem to think it means I have a meat cleaver in my pocket and I’m about to swipe at them with it. (OK, perhaps if Donald Trump was in front of me I might do it and then claim insanity). But the world has changed so much in so many different ways, but not with regards to having illnesses. It’s twenty years this year since I “came out,” but it’s weird that in 2017 I get a worse reaction telling people I have bipolar than telling them I’m gay. And telling someone you don’t work at the moment because you’re ill is even worse. Quite clearly you’re just scrounging off the state for the hell of it.
And yes, Grandma, I have the problem with the handshakes too. I have to warn people “GENTLY!” before they do it now. They think I’m nuts, but hey ho. There was a newsreader on the BBC a couple of years ago who wrote an article about having PsA and how the Chancellor of the Exchequor shook his hand in the studio on meeting him and the newsreader shouted out in pain! So it;s not just us.
It’s not exactly fitting… but it helped me understand why people need to think we are somehow to blame and everything that doesn’t fit into there box of “sick” is immediately used to say “ha! See your faking it”… or “ha! It’s your own fault!”
Wow, reading this thread reminds me so much of many of the feelings I had in the first years of diagnosis.
I was 36 at onset too. I managed to make it through to effective medication without a cane (though only with using every park bench on the street between my car park and my work, and then for a long time use of the devil incarnate - long term steroids). Mine wassudden like yours - almost overnight (at least on the scale of arthritis) - within 6 weeks the inflammation in my lower back actually had my legs and feet going numb… at least it no longer hurt!!! (Only for a day unfortunately)
I work in the mining industry - weakness is not well tolerated. And they see illness as weakness. When I was first diagnosed, I told my immediate boss - not in attempt to gain flexibility, changes in work environment etc, but because we had a lot of trust and he’d been unquestioning while I’d had the uncontrolled disease for 3 months prior to diagnosis, and my performance had suffered so badly. He was obviously abundantly aware that there was a major problem, but had humoured me to that point and deserved an explanation. And of course, I assured him that now I had diagnosis it would all be manageable with treatment.
Even now, in near remission, I don’t admit to people in my workplace I have inflammatory arthritis (though it’s there in black and white in my medical - all they read is the bottom line of “fit for work”, or not).
I’m really hearing you - the stigma associated with this (whether it is a cane, or in a highly intellectual job, brain fog) is very difficult to manage in a normal work environment. In my case, I’m lucky enough to have the stars align so I can do consultancy, mostly at the speed the suits me.
Nowadays, even in what I call near remission, my effective creative, problem solving, brain time is only around six hours per day (on a good day - so usually only around 3 days per week). Before I had PSA, I probably worked for 12 hours per day, 5 days per week, but only had effective hours of around 9.
But the thing I’ve really learned since doing the consultancy work - apparently most people - autoimmune, inflammatory disorder or not - just aren’t that efficient. Might be they are tired, bored, incompetent, distracted - and my goodness, the whys - cancer, affairs, not seeing their kids enough
So, despite my chargeable hours for my current client being an “inefficient” 4-6 hours per day, they are trying to lock me into a long term contract. Which I guess means that they think they are getting serious value for that 4 hours pet day, and, - there is just nothing wrong with a nanna nap
It’s a good thing that you have an understanding workplace, and one that values you, for sure. The main issue with the brain fog, since what I do is more of the brain stuff, is that what I used to be able to do in two hours, now takes four. It’s irritating, but I’m learning to get through that.
The nice thing is that, considering I’m a desk jockey, I’m not going to be expected to run around all day, so it’s not affected the way work views me - long as I get my work done, I don’t think it’s going to be an issue.
People have actually just accepted the arthritis thing and moved on. Little over two weeks on the cane, and it’s now just accepted. I actually test myself every morning to see if I still need it - walk down the stairs to the basement every morning. If my leg starts to twinge and hurt after a few steps, cane comes with me.
I’ve not had a day yet where I didn’t bring it.
I get what your saying about effective hours… we know exactly how much time we can be productive… But right now at work eventhough I am extremely slow for my standards I still get stuff done more quickly then like 30-50% of my colleagues… All they seem to do is move things from one spot to the other and complain about how busy they are… Or talk for hours a day about there weekends or family…
That happened to me, just in a different direction. I hadn’t been to church for a while and one of the older ladies came up to greet me while I was explaining to another older lady that my latest MRI showed I would need surgery on my right shoulder.
First older lady heard all that and as she was talking to me, HIT my right shoulder, not hard for a regular person but I yelped. When I told Paul at lunch, he wanted to know what I thought when she did that. I told him I wanted to say dang, (lady), didn’t you just hear me say part of the rotator cuff is missing on that shoulder and I need surgery?
Oh, I’d have wanted to say much more than that!!!
People are just ignorant and uninformed. I got this in my 20s and just started to explain to people just what Psoriatic Arthritis it. Best to inform them then get upset. BUT that said, what infuriates me is someone you meet, especially men, shake my hand so hard I scream. And Yes that has happened. Oh and I swore.
Oh god the handshake thing!! I hate my birthday and first day abck after New year’s! It hurts so much!
I completely relate to what you’re saying. I think there’s a fine line between providing a high-level explanation for my limitations and maintaining my privacy. At this stage of my career, I limit my sharing to a limited number of trusted colleagues.
When they say it to me, I state that I’ve had it since I was 14. I figure why not go for the full pity?
RE: the handshake
Could you avoid handshakes completely with simple decline and the vague comment “I’ve had a cold…”
That way you’re not providing any personal info, you’re avoiding the handshake, and you appear to be very upstanding and a people-person by not wanting to spread germs. Could be a win-win-win situation.
I use the cold excuse to not do the 3 kisses… Which are worse then the squeeze in my opinion…
Have Palmoplantar Pustular Psoriatic Arthritis. I was at my hairdresser’s, who I’ve seen for about a year, & who has kindly asked me in the past what the disease is & I explained as clearly as I could to a newbie. Anyway, the other day while she was working on my hair I took my shoe off & pulled my sock just off my heel (I didn’t want to freak her & the other people in the shop out by taking the sock up any further) so I could rub the swollen mound where my ankle should be. She looked at it & said oooh your ankle looks swollen - is that water retention? I could have cried.