I feel hurt and a little jealous of those who have support, especially from their grown children. Mine don't take Fibromyalgia or PsA seriously. When I update them after a doctor visit they don't really listen to my concerns. My worst fear is the damage medications are causing to my liver and colon. When I miss an activity because of IBS they just say I should think positive and my stomach will feel better. When I tried to explain my depression to my daughter she said she had depression too and I should keep busy and and not think about it. I hate to think I raised them to think this way. Maybe that's my worst fear.
awww, kids are just selfish! I think it's also hard for people to imagine pain like what your going through. Somebody just asked me the other day if a certain diet would help. Seriously! People just don't get it!
Our disease is misnamed, so how can we honestly expect people to understand? Fibro has for years ( until very recently - at my age anyway) been considered psychiatric disease so it isn't a good one to compare too either. I don ' t mean to be critical but, I frankly amazed how little some of us know about what we have. Perhaps a good starting place would be to know as much as we possibly can our selves so we can answer folks questions.
Diet is one of my favorites. . . "Yes diet CAN help but generally if we keep up on treatment we can avoid having the disease attack our intestines necessitating special diets and even feeding tubes. Only 5% get that kind of progression, usually we get heart failure first. . ." That usually shuts them up. OBTW, I've heart failure twice, its pretty easily treated.
You want power? Knowledge will give it you.
If I want to tell people what I have I start by saying "I have an Auto Immune disaese called Psoriatic Arthritis."
I focus on the "Auto-Immune" part of the disaese because people seem to get the seriouness of it a little more than just saying that I have Arthitis.
Google "International Auto Immune Arthritis Movement" they have some really good ideas on how to define your disease and differentiate between "Osteo" and what we have.
I hope this helps. :)
I agree with Louise International Autoimmune Arthritis Movement is an amazing organization and full of wonderful information, I also try to focus on the Autoimmune part and not the arthritis part. Anyone that watched me go through the last several months saw what a horrible disease this is and how much pain it can put you in and how hard it can make every day events like sleeping, or standing up or cooking, driving its very hard thing to deal with even harder when you have no support