I have to say I'm really annoyed. Especially at one of my brothers. This past year I've tried to explain to my family what PsA is and the troubles I have. As usual people hear "arthritis" and think they understand PsA. After that they completely block out any information I give them and it's getting really annoying.
My brother tried to make suggestions to me and I told him if he wanted to do so, he needed to understand what PsA is and I sent him a helpful easy to read link. He never bothered to read it. When he made suggestions again I asked if he read it, he hadn't. Then at Christmas dinner...he questioned my pill organizer and asked me what I had. Are you flipping kidding me !!
You know one of the reasons I send my family the info is because i have young nephews that could end up with this and I want it to be caught early to prevent them from having the problems that I have. No one seems to pay attention. Even my brothers, they could still end up with it but still no one listens.
My family is very negative and critical of me and I am sure he's wondering why I'm taking these pills instead of some natural remedy. Next time he asks, I will suggest that he can spoon feed me when my hands no longer work !! It's really not healthy for me to be around my family.
Sorry, I think I've ranted about this before but it never changes. The only one who seems to have clued in is my sister in law...which was surprising ! Go figure, she cares more than my own blood relatives. My family is messed up. I wish they would grow up.
Dini, I think you’re going to find yourself in good company on this one. It is so bl**dy annoying, no, downright infuriating, isn’t it? I’m thinking that your brothers are in denial: this is all hitting a bit close to home for them. Much easier to think of Dini as energetic and hard-working and A-OK.
Part of the problem is the “arthritis” word, you are so right. But not much to do about that, it’s called what it’s called.
Rant on. We hear you.
Hi Dini. I'm really sorry you are not getting the support from your family that, in a perfect world, you should get. I don't know what to tell you about that per se but I can say that you aren't alone if feeling ... well, alone and not getting much support.
I think just about any chronic disease can be an isolating experience. That's because others simply don't understand what you are going through and may be uncomfortable trying to find out. You are right, too, about the word 'arthritis' - most folks don't know there's more than one type and don't have a clue what it really means to have an autoimmune disease.
I have started seeing a therapist just because I need somebody to talk to in depth and to help me work out my frustrations and grief at all the things that I have lost due to my disease. If that's something that's available to you perhaps it might help.
Just know that you aren't alone and that you can come here and rant to a sympathetic audience. I sure hear ya and am sending you some good vibes. Hang in there.
I was dx when I was young, and my siblings were (and still are) the most clueless about my disease even 30 years later. I've got a lot of experience just ignoring, and farming out my frustration to friends, spouse, and therapist / support group. I live far away from most of my family, but my sister who lives an hour away has not bothered to ask how I'm doing even once despite knowing that I've spent half of the past year basically bedridden part of each day due to uncontrolled disease (yes, I have medical care, just on the med merry-go-round). I have to let it slide past. I'm more annoyed lately with acquaintances telling me to just drink cherry juice or cut out gluten or whatever. Most of the time I put on my educator hat but sometimes I just don't have the spoons for it, and sort of roll my eyes and change the topic.
Thanks everyone ! I guess this is bugging me more than I would like the past few days. I am seeing a psychiatrist but don't have an appointment for another 3 weeks. It has actually helped me a lot seeing him. I think I'll write it all down and can talk to him about it then.
I just made the mistake of mentioning to my mother without going into detail. I know it's partly because they can't really see that I am not well they don't see me as being sick. I'm having a rough day...no energy. The stress isn't helping. Thankfully I'm having dinner with friends in a few hours. Although I'm tired I'll force myself to go and enjoy of good company and food :)