I have been trying to figure out how to tell my close friends and family about my PsA. They all sorta know, but get very upset when I am too tired to go out for Girls Night or other events. I just came out of a remisson or whatever you call it when its not "too" bad. And am now worse then ever before. My Mother-in-law finnaly realizes something serious must be going on if I have to give myself injections.... but I never have really talked about it even with my closest of friends. I would like to let them know I want to hangout, I want to go do things, I just can't always do it.
I really want to let them know, just so they have a little understanding. I feel very isolated and that is not a good thing. And eventhough I know I want to tell them I just don't quite know how without saying " attention everyone, I have PsA" which is NOT what I want.
most of my friends and family know a little, as I was somewhat diagnosed when I was 16, 20 years ago... but at the time is was "well you dont have RA, so lets just call it osteo.."
even my husband is pretty clueless however I am making him come to my next Dr appointment, so that should help.
Hi, Ocustamp. i’m glad you’ve joined us, but sorry you had to! Yes, your story and your question sound all too familiar! If you go looking through old threads, there are others like this!
My first bit of advice is never to say that you have “arthritis”. That word immediately brings to mind granny’s achy hands. I still make the mistake: the last person who I told about my arthritis replied with “Oh, ya, look at my foot, see that lump, that’s arthritis and it’s wrecking my golf game.” Conversation over! Very few get it once you’ve said “arthritis”.
Better to say you have Psoriatic Arthropathy. I usually add that it is destroying the bones and joints in my feet at the moment, like it destroyed both my knees (I have two knee replacements). That’s usually enough to make people look concerned and uncomfortable, and then they change the subject. Fine, at least they get the idea that what I have is serious. The odd person wants to know more, and that’s fine too. I will explain.
For the rest, the ones who really need to know the gory details (like family and close friends), refer them to some of the excellent web resources available.
What we have is a disease which is hard to diagnose, hard to treat, and waxes and wanes. Sometimes I wish I could just have something nasty, straightforward and treatable. A while ago our neighbourhood was full of concern about Sandra, who had a heart attack, ended up in hospital, and got several stents. Nasty for sure. I’m sorry that happened to her, but a few weeks later she was fine, just fine, and her life is back to normal. Well, that’s not the way it is for us, and I don’t think it ever will be. Dealing with this disease is a largely solitary pursuit, until … you come here!
I hope you find this board, as many of us have, a great source of support, information and companionship.
Seenie
Thank you Seenie. I have looked back on old treads, and have myself learned not to use Arthritis.... "your to young for that" is the usual reply.
I am really looking for some kind of outing... I know my friends all wonder what is going on, but are all afaid to ask.. We are getting together for dinner next week and I want to fill them in, because they are all my best friends, but none have a clue..... and I am not sure how is the best way. I don't want sympothy, just a bit, even a little tiny bit of understanding.
Very nice explanation Seenie. This board has been awesome for me. If I have to hear one more time that my arthritis is acting up cause the weather is changing, I could just scream. If only it were that simple. But thank you so much for your great words and support.
Seenie said:
Hi, Ocustamp. i'm glad you've joined us, but sorry you had to! Yes, your story and your question sound all too familiar! If you go looking through old threads, there are others like this! My first bit of advice is never to say that you have "arthritis". That word immediately brings to mind granny's achy hands. I still make the mistake: the last person who I told about my arthritis replied with "Oh, ya, look at my foot, see that lump, that's arthritis and it's wrecking my golf game." Conversation over! Very few get it once you've said "arthritis". Better to say you have Psoriatic Arthropathy. I usually add that it is destroying the bones and joints in my feet at the moment, like it destroyed both my knees (I have two knee replacements). That's usually enough to make people look concerned and uncomfortable, and then they change the subject. Fine, at least they get the idea that what I have is serious. The odd person wants to know more, and that's fine too. I will explain. For the rest, the ones who really need to know the gory details (like family and close friends), refer them to some of the excellent web resources available. What we have is a disease which is hard to diagnose, hard to treat, and waxes and wanes. Sometimes I wish I could just have something nasty, straightforward and treatable. A while ago our neighbourhood was full of concern about Sandra, who had a heart attack, ended up in hospital, and got several stents. Nasty for sure. I'm sorry that happened to her, but a few weeks later she was fine, just fine, and her life is back to normal. Well, that's not the way it is for us, and I don't think it ever will be. Dealing with this disease is a largely solitary pursuit, until ... you come here! I hope you find this board, as many of us have, a great source of support, information and companionship. Seenie
Ah, I see ... well, great that you want to fill your best friends in. Way better than having them wonder what's up with you. But you don't want your condition to be the theme of the evening. (What a downer!) To pull it off, you'll have to do some preparation ahead.
Before you go out with the BFFs, put together an email with a set of links and resources that you can send your friends when the time is right.
Then it's time for girls' night out. It's a good time to tell them, but you don't want want the whole evening to be about you. So I'd say, tell them you've got news, but you don't want to dwell on it. How about something like this -- "I've been sore and tired and finally the rheumatologist figured it out. Psoriatic Arthropathy -- it's a long story, and talking about it too much will spoil everybody's evening, so, if you want, I'll send you an email with the scoop". That opens the door to talk about it a little, but you will be able to control the situation and change the subject by telling them that as soon as you get home, you'll email them some information. Then enjoy your evening out!
Think that could work for you?
Seenie
PS message me if you'd like some resource links
ocustamp said:
Thank you Seenie. I have looked back on old treads, and have myself learned not to use Arthritis.... "your to young for that" is the usual reply.
I am really looking for some kind of outing... I know my friends all wonder what is going on, but are all afaid to ask.. We are getting together for dinner next week and I want to fill them in, because they are all my best friends, but none have a clue..... and I am not sure how is the best way. I don't want sympothy, just a bit, even a little tiny bit of understanding.
I find that my friends and family have an easier time reading my blog posts and then asking questions, than me coming out with a laundry list of "this is life with PsA."
My thought is a little different - if you are going out with your best girl friends and they want to help and you want to tell them what’s going on with you – you should bring it up at dinner & let it all hang out. All the pain & life changing stuff. Obviously you’re not someone who talks about it all the time (or ever), so you won’t be boring them. When I finally could tell my friends more than “sorry I’m a little under the weather again”, it was cathartic and great for our friendships. In contrast - my sister has juvenile diabetes and never ever talks about it. Her friends see her take shots, but don’t know her inner workings, fears, etc. It keeps them at a distance. Her choice, but not what I choose. I am still very private, but I can let my friends in too.
Definitely, RB! It needs to be brought out front and center at dinner, and doing so can only strengthen her relationship with her BFFs. If all of her friends are really engaged in the discussion, Ocustamp could decide to allow the evening’s conversation to be all about her. But having the option of offering the email information will give her a gracious “out” if she feels the topic of conversation needs to be changed.
Nym’s blog posts are works of art. I particularly liked the one about the pain scales!
I adore nym’s blog and count on it. Lifts my spirit every time.
Ocustamp- talking about my big health stuff the first time was huge (I mostly did it by email bc I could never get out). My friends had no idea I was that sick - and they insisted I wasn’t boring them by telling them - being a medical mystery is cool, it turns out. But Seenie is right - I’m private and it was nice to get back to other topics
With that off my mind - I could get back to talking about my kids, tv, and all the fun stuff. Or later - - laughing about whatever bizarre new drug I have.