I'm still fairly new to this group, but I've had PsA for almost 18 years. I recently wrote about a flare I'm dealing with. I've been taking Pred , getting acupuncture twice a week and also saw an Integrative Medicine Dr hoping for some type of ridiculous miracle. (which i logically know I won't get)
This is the first really bad flare I have had in about 7 years.(since starting Remicade) My husband is my biggest supporter, but beyond him, no one seems to really care. No one asks how I am doing, if we need help (we also have a 1 year old) or even really checks in with me. I'm the type of person to just tell people hello when I feel they may need it or send a random card to make them smile. I guess I just hope to get the same in return. I feel like I can't vent to anyone, that they get bored. The thing is I've never really complained about to anyone bc I don't want pity, I just want people to care. I just want a hug once in a while or even a quick text to show that they care.
Sometimes I just want to rant on FB about this disease and try to make people understand how much it sucks and how it affects MILLIONS of us every single day. But then I don't do it bc again I don't want it to be about pity or me saying "I need attention" but Is it so wrong to want that type of attention or some love from your "friends"
My knee is now swollen and extremely stiff. Every time this has ever escalated it ends up in knee surgery. I'm really scared, I can not have surgery with a one year old. It would be a total replacement this time. =( I just am scared and lonely and feel so angry at people who complain about their colds or that will go away in 2 days. People never appreciate what they have. And I haven't had it in so long. I can't even remember what life was like before. (I was 17) And to think we all have to live this way is so unfair and so sad and daunting.
On the other hand, I tell myself it could be MUCH worse, And I should stop complaining. UGH!!! Sorry- I really needed to vent! And some prayers wouldnt hurt if anyone is into that. ;)
Smboc, I’m sorry you’re feeling miserable. We do get it here, and I’m glad you’ve found us. You’re allowed a little venting here.
Damned difficult disease, this, and like you say, nobody really gets it. To the rest of the world, it’s “just a little arthritis”. Sure, we all have our aches and pains … have you tried rubbing shortening into your knees? (KIDDING!) A while ago, our neighbour ended up in the ER with chest pains and had to have a stent put in. Nasty, yes, and the neighbourhood was all abuzz. There were cards and casseroles and offers of help … not to trivialize her problem, but she quickly returned to normal and is now just fine, thank you very much. I have to admit that I felt a little bitter about that.
Yes, it could be much worse. But that doesn’t mean that you don’t deserve a little sympathy when you’re feeling down. We hear you. Glad you’ve found us, Smboc, but sorry that you had to come looking.
I was just thinking today my siblings and friends who are otherwise very nice caring people never ask me how I am doing with my PsA. I keep my complaining to a minimum because I don’t want to be viewed as a whiner. But I have had this disease for many decades with much suffering. I guess I look fairly “normal” so I appear OK. I am never asked about it. It hurts my feelings and I am bitter about it. I think I will have to take the initiative and ask them why they never inquire. Well, if Phil Michelson can play championship golf with it it must be a mere annoyance.
Thank you for your kind words, Seenie. I laughed at your "shortening" comment. My cousin last week told me to just drink some honey with cinnamon. I just stared blankly at her. BUT, she was the only one who actually said anything, so I guess I shouldn't be negative. IDK , there is just such a fine line, in my opinion, of discussing it and educating people and becoming a chronic complainer or someone that seems to be seeking pity.
I agree, I think i have caring people around me… but not a word. And it also makes me feel bitter and angry. I support them through all of their issues and I would just love some of that in return. Renie said:
I was just thinking today my siblings and friends who are otherwise very nice caring people never ask me how I am doing with my PsA. I keep my complaining to a minimum because I don't want to be viewed as a whiner. But I have had this disease for many decades with much suffering. I guess I look fairly "normal" so I appear OK. I am never asked about it. It hurts my feelings and I am bitter about it. I think I will have to take the initiative and ask them why they never inquire. Well, if Phil Michelson can play championship golf with it it must be a mere annoyance.
It is a very fine line. And I'm not sure that people around us will ever get it right. If people ask me too much, I feel like they're being intrusive. I'm typically happier if people don't ask too much.
In terms of help, I ask if I need help. Even when I had hand surgery last year, I asked for help. I didn't mind. Otherwise who would know that I needed help.
Smboc said:
Thank you for your kind words, Seenie. I laughed at your "shortening" comment. My cousin last week told me to just drink some honey with cinnamon. I just stared blankly at her. BUT, she was the only one who actually said anything, so I guess I shouldn't be negative. IDK , there is just such a fine line, in my opinion, of discussing it and educating people and becoming a chronic complainer or someone that seems to be seeking pity.
So sorry to hear you’re feeling so down about peoples lack of care Smboc, I think most of the time we can accept it but often when we are having a particularly bad time it can really hurt. I have some lovely work friends and colleagues, but there’s only a few who actually get it and guess what, they all cope with their own chronic conditions, we are a little support group for each other.
Never feel bad about venting here, we all need someone to listen and understand, sending you a hug x