I have to start a new moan!!! I really don’t know how to cope with this. I just had a parcel delivered at work which isn’t particular heavy but I can’t grab it with my hands and I have to move it three flights of stairs. I asked someone I don’t really know to help and she gave me a funny look…I look young and fit…What do you do? Do you keep saying I have arthritis, even to people you don’t know? I hate asking for help especially when I should be able to do things myself!!!
Hi yael, that’s hard and I am glad you shared it as I think many of us have struggled to ask for help …our independence is fierce at times which I think can both help and hinder at times. Sometimes it is so hard to try and work out how to get our jobs done and managing other peoples reactions can make it harder! …I have struggled to ask for help at times which has usually meant I end up overdoing it and have a flare. Good on you for asking
Asking for help is one of the most difficult skills to develop of all and it’s probably the most difficult to learn. And then there’s the other problem: say the “A-word” and you will be showered with unsolicited well-meaning advice like "drink three parsley smoothies a day and you’ll be just fine ". Or empathetic comments like “oh I have arthritis in my little toe and it ruined my golf swing”.
And yes, it’s hard to ask when you look young and healthy as you do in that beautiful profile pic. Thanks for adding that.
Instead of Arthritis use the words “Autoimmune Inflammatory disorder” They will be so busy googling they will leave you alone.
Until you meet the likes of my cousin who looks smug, gives you that self-satisfied smile and asks “Have you tried the anti-inflammatory diet?”
I like “Psoriatic Arthropathy” myself, but I usually remember that just after I’ve said “arthritis”.
Thanks guys…I now have to work out how to say it in Hebrew😊
I just say I have RA, more people are familiar with that disease, and they come and help. Trying to say anything other than that they just look at me and walk away.
Sister-in-law told me to not eat bread anymore after she heard what I had, and told me I should only eat organic food as that’s all she does. As she drank a coke.
To be honest, this is one of the hardest parts for me too. Moved house recently, and I did as much as I could do, more really. Paid for it. Helped the in-laws move a few weeks later. Same deal.
My wife has started to pick up on my tells, though, so she’s starting to yell at me to go and sit down while she does whatever it is. Harder to get through when she’s not around and I decide to go ahead and do something like walk around a warehouse for 3 damned hours.
It sucks, because as a young-ish guy, outwardly looking fine, much as you describe yourself, unless you know me, you don’t know what I can’t do.
Haven’t figured out how to tell people without it being awkward yet. Maybe calling it what it is like Seenie says is a good call.
I find most people kind of tip their head to the side and say, what’s that? At least that’s how my 3 coworkers reacted. I just said it’s inflammatory arthritis and gave up after that because they started relating to it with horror stories about the OA they have in their little finger. People just don’t get it, and in my case, too, I was so embarrassed about my psoriasis I kept it hidden pretty well and didn’t really want to have a show and tell session with that. Once I made my announcement a couple years ago at work (shortly after I started Enbrel) my PsA hasn’t been brought up once. People either aren’t interested or they’re embarrassed for us and don’t want to pry. Oh well, I’ll just continue to hope Enbrel keeps my symptoms under control and most people won’t think there’s anything wrong.
I’ve been noticing this recently. I have tennis elbow right now so I tell people I have that and that seems to reduce the amount of dialogue about it. Other than “you play tennis?” I’ve just recently started asking people for help and am playing with a few different answers. “Inflammatory arthritis and starting a new RX to give me some relief” seems to work ok. As long as I dismiss the “you should try turmeric” response politely with a smile. “Autoimmune disorder” sometimes works as an excuse when I can’t attend something or do something. But using the term tennis elbow or arthritis works well when I can’t lift or carry something. I like the idea mentioned earlier of saying you have RA. I may try that. I’ve just recently been asking for help. It took me a while. It’s hard to ask!
I just hate it when I say “autoimmune disease” and people say, “what’s that?”…do they not read anything?
I was a little grouchy yesterday and explained to someone unaware that my body was eating itself. Lead to an uncomfortable silence, but it got the point across, and things picked up after that.
Nope. Why would they read about it Grandma J? They have their health. Momma always said if you have your health you have it all.
Sybil, I think that’s a universal thing!!! You’re probably right, Richie–I probably only know about it because I researched it after hearing that psoriasis wasn’t just a simple skin disease and was “deeper” than that. We don’t know what it is to be healthy! I often wonder what it feels like to feel normal…I remember feeling really good right after I started taking Enbrel for almost two whole MONTHS!!! --and then my back went out and I haven’t felt perfect since! This stuff really takes its toll on us.
Here, Google helped me translate… לא העסק הארור שלך The phrasing may be off but it might help in this scenario:
YOU: can you help me with this package please? I just can’t seem to manage it today.
OTHER: Really? Why?
YOU: לא העסק הארור שלך (to those not willing to use Google translate this reads as “none of your darned business”!)
Seriously, though, I’m tired of explaining myself and also tired of a society that seems to continually police the behavior of others in just about all places, especially online. My new approach is that I need be courteous and polite (well that’s not new) but I owe no one an explanation for my behavior, comportment or well-being!
LOL - that is so funny!!! I am really going to try and adopt your attitude. Why should I have to explain myself!!! Let them think whatever…easy said than done but I’m going to try.
Where’s the “love” button? Hilarious, but so appropriate.