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Living with Psoriatic Arthritis (PsA)

If one more person


#1

… tells me I’m too young for this to be happening to me when I say “arthritis” to their questioning, I swear I am going to scream or tear my damn hair out, or both.

I obviously am not too damn young for it, given the fact that I am currently walking with a cane and relearning how to do pretty much everything.

/end rant brought on by 14 people saying this to me today.


#2

14! Oh well, we can’t win, when you’re older it’s ‘what can you expect’ LOL! I suppose the answer is yes, I am young & I’m intending to get even younger when I get this serious autoimmune disease under better control.


#3

14?! That’s insane… There’s children with this disease…

They probably mean it more like “poor you!” Then “you must be making it up” though… At least I hope so… Even then… must be nice to not have to know young people can get arthritis…


#4

you could just club 'em with your cane…


#5

Just say you have autoimmune psoriatic arthropathy. The minute you say “arthritis” you are going to get some stupid comment. Like the guy who said he could imagine what it was like for me: he had arthritis in his little toe, and “that sucker’s wrecked my golf swing”. I wanted to run over his little toe with my mobility scooter.
Have you been getting good advice about miracle cures too? Diets? Rubs?
Welcome to our world.


#6

I’m thinking, too, maybe they’re saying that sympathetically as in that is just not right or fair for such a young person to have to fight a disease like arthritis! To me, as an older person, I just feel awful when I hear of young people–that is, anybody under middle aged (to me)–to have something so debilitating. Oh I know young people suffer from many terrible things that ideally only old fogies who’ve already enjoyed a long, healthy life should end up with. But, that is so sad. If life was only fair and everyone could be healthy and carefree until they’re old. If only.


#7

I agree with you, about the sympathy. When I was first diagnosed, I would say that no, I am the exact right age to develop this. Now that almost 10 years have gone by and I’m 45, I now get people telling me about their arthritic knee, etc. And I’m like, yeah. This is systemic.


#8

Oh, I fully understand it’s sympathy. I just mutter arthritis because I don’t really want to discuss this with most of the people I work with. Not that they’re not nice people - but they’re just coworkers. The most they need to know is that I’m not going to be able to help them lift something up, and the chances of that, given that I pour over floor plans all day, is thankfully already low.

It’s mostly due to the use of the cane, of course. Before that, while I was limping pretty badly, it was ignored. Interesting really - if you don’t have an outward sign, people aren’t too bothered for the most part.

I do get a twitch when I’ve gotten the “oh, I have that in my finger, too, I can sympathize,” but I tamp that down pretty quick. I feel like anything I say to that would be taken as one-upping them. “You call that a knife?” kind of thing. Their pain isn’t less valid cause they’re not slowly dissolving, you know?


#9

As soon as you can walk without the cane everyone will assume your completely healed… your either healthy or getting better… it’s impossible to be anything else…


#10

It must be so nice to be healthy and clueless…


#11

This is a good place to rant… But I would suggest you some how figure a way to grant these folks some grace. I learned (relearned) a valuable lesson last month. I had to take some IV medicine on a daily basis. Rather than being in the hospital where I SHOULD have been but as it was over Christmas and my grandaughter was freaking I decide to be a commuting patient. I ended up taking my IVs in the infusion center. I knew I was the lucky one. most of these folks were going to die. The problem was I had no clue what to say to any of them. I’m certain in trying to be sensitive I said more than one insensitve or stupid thing. people simply don’t know what to say in these situations especially with young(er) folks. I did express some jealousy at their porta caths as I need stuck every day. We ended up with a pool as to how many times it would take them to find a good vein. Now I just drop by for coffee after my PT. made some new friends. More information isn’t always helpful. I have tried all kinds of different things. Smiling and saying somedays are better than other has become my usual as of late.


#12

I hit the like button, Richie, but I really wish there was a button for “Laughed out loud, isn’t that the truth!”


#13

Hey, I’m unhealthy and clueless. That’s a start, right? :wink:


#14

Yup, darinfan, that’s where we all started. :joy:


#15

We all need to laugh Seenie. Its one of the few things I can still do that doesn’t hurt. (much) :wink:


#16

Its nice to have company darinfan. :stuck_out_tongue_winking_eye:


#17

Trust me @tntlamb, I don’t really begrudge them the sympathy I know they’re giving me by saying it. It was just aggravating to have the same dang thing said to me over and over. I know they a) don’t understand the disease, b) probably really don’t want to, and c) want to be nice to someone in pain.

To be clear, I also don’t begrudge them on either of those first two points either. Can any of us really say we’d want to know anything about this if we had the choice? Sure, there’s some of us - myself included - who would definitely listen and empathize the best we could, but it’s not something I’m going to force on these folks either. They have their own stuff to worry about, and if the most they want to do is make it clear they have some empathy, or even sympathy for me, that’s cool.

Today, even, another person here with a form of arthritis said she feels so bad for me. All I did was give a slight smile and say I’m adjusting. After all, I am, bit by bit, to my own personal new world order.


#18

I have a really good friend with whom I discussed the frustration of people asking how you are and then don’t wait around for an answer, or those who ask in a roundabout way why you aren’t better yet. He makes it a point to ask me how I’m doing TODAY. He knows I’m never going to be well but to know someone thinks enough about what I’m going through to ask me just about today is a wonderful thing. Last week I saw him and I was really sore all over. He gave me a big hug and before he did said “I’m not going to squeeze”. What a great friend!


#19

No squeezing friend is a good friend.

That sounded better before I wrote it down.


#20

Yes, please don’t squeeze the hand of a person with arthritis! I used to go to mass on Sundays and during the handshake a guy gave my hand such a squeeze I yelled “ouch” loud enough for everyone around us to hear! I’m sure he was just trying to impress me with a very “manly” handshake, but I’m sure he was embarrassed! I try to avoid handshakes now.