Thank you all so much for your kind words and support. It makes such a difference to me knowing you all go through the same things that no body else can even fathom. I don’t like to whinge and complain which is some ways as done me an injustice. Not complaining can mean people get complacent and forget that limping or being able to not walk , not write, not sit or stand, being very uncomfortable and in pain, is not normal just because they are used to seeing us that way. I need to be much more proactive about my health both mental and psychical and I lost that for a while. I need to make sure my doctors and family hear me and understand me. If they don’t accept it after that its their problem not mine.
Hugs to all! (Gentle ones!!!)
Once when someone used the old, "But you look and act fine!" line on me, I said, "Yeah... people with cancer often look and act fine, too. Sure, the chemo (which many people with PsA take) and the cancer make them tired (like people with PsA), and sometimes they need assistance walking or getting around (like people with PsA), and often need to rest more than normal (like people with PsA), but they often look and act fine." I think that really got the message home. (Hmmm...this sounds like it has the makings of my next blog post! LOL)
Oh nym do write a blog on this! I applaud you for your witty and insightful blogs. I am sitting up front to read it first!
Rebel Mom - Thank you so much for posting this! It really sums it up well. I haven't really shared on FB what is going on with me with the PsA diagnosis but I did post this. Thank you!
Rebel mom said:
This is a website that I let people read. I does not talk about PsA but it talks about autoimmune arthritist in general. http://www.iaamovement.org/uploads/What_Does_Autoimmune_ArthritisThan_F...
My family is starting to understand my limitations but friends. No, to them I look like them. Only a few really understand.
So far I've had 90% positive support. It's likely because this is so new to me (as in weeks old!) that everyone wants to help. Once a chronic problem is "old news", it's hard for people to realize that you are still going through it. I've always felt that way about may conditions. First diagnosis is a big time for rallying support. But 2 years down the line? No one remembers that you are still suffering the same - or even worse - than day one. I've made an effort to support people with chronic illness for months/years after diagnosis. I think it's just hard for some folks to relate. It's not like a cold or flu that you just get over.
My MIL would NOT be wonderful to you. She was borderline abusive to her MIL when she was living with her, so I don't think you would want to trade. And if your mom is really that bad, she probably wouldn't be too nice to me either.
michael in vermont said:
Oh how awful. My husband and son are great so I really shouldn't complain but right now I am so hurt by my mother and sister's behavior.....I"ll trade you a mother and 2 sisters for one MIL.......The sad thing is probably your MIL would be wonderful to me and my Mum and sisters would probably be lovely to you......
People can't read your mind, and when confronted by someone in intense pain, they don't often know how to handle it. They may not know what to say and to fill the void, they may say something stupid. One response to, "you look fine" might be, "that's the weird thing about this disease, I may look fine, but inside my joints are a disaster and right now they're killing me!"
Hands down this is the best group of responses to any discussion I've read on this site so far. Thanks to each of you for sharing your good humor and (insert adjective of choice here) coping skills. There are a few in my life I could cheerfully slap or choke if I didn't think it would hurt my hands so bad. I'm now going to memorize some of these one-liners before bed. I'm chuckling.
Sweet dreams sweet Jane <3
You are so right.
nym said:
Hugs to all! (Gentle ones!!!)
Once when someone used the old, “But you look and act fine!” line on me, I said, “Yeah… people with cancer often look and act fine, too. Sure, the chemo (which many people with PsA take) and the cancer make them tired (like people with PsA), and sometimes they need assistance walking or getting around (like people with PsA), and often need to rest more than normal (like people with PsA), but they often look and act fine.” I think that really got the message home. (Hmmm…this sounds like it has the makings of my next blog post! LOL)
Dear Robyn,
Silence is what works best for me - I'm not talking about the silent treatment, or suffering in silence. I'm talking about becoming silent within myself (meditation works best for me). Then I don't get so caught up with what others think or say - we judge (and even destroy) what we don't understand (sad but true). The more I practice silence, the less I need to prove anything. Often I have no external signs of illness and since my loved ones are used to me being fit, healthy and with lots of energy, I think they choose to not SEE - so silence helps me remain true to who I am - not the illness, not the opinions of others, not the dictates of my own mind (when I get anxious or depressed) - but ME... Fortunate for me my partner is very supportive - Love Annemarie :)
Thank you Ann Marie. You are very right
Ads said:
Dear Robyn,
Silence is what works best for me - I’m not talking about the silent treatment, or suffering in silence. I’m talking about becoming silent within myself (meditation works best for me). Then I don’t get so caught up with what others think or say - we judge (and even destroy) what we don’t understand (sad but true). The more I practice silence, the less I need to prove anything. Often I have no external signs of illness and since my loved ones are used to me being fit, healthy and with lots of energy, I think they choose to not SEE - so silence helps me remain true to who I am - not the illness, not the opinions of others, not the dictates of my own mind (when I get anxious or depressed) - but ME… Fortunate for me my partner is very supportive - Love Annemarie
http://rannygahoots.blogspot.com/2012/12/im-not-fine.html
Not my best, but with the pain I'm in today, I'm sure you'll understand!!!
Sometimes saying things like "Well, you don't look like an inconsiderate jerk." (from your blog) are the right thing. Often they're not. But those zingers sure do feel good! And I loved your post. Pain or no pain. BTW--you look great...
Not my best, but with the pain I'm in today, I'm sure you'll understand!!!
To be honest Robyn, people in general only care about themselves in this day and age. we suffer from a disease that no one knows about let alone understands. when people hear the word arthritis, they think of a little aches and pains. You just have to learn not to take it personally. I know that's easier said then done but you'll end up bitter and resentful If you don't.
Thank you. I know you are right. I have people who love support me and understand.
I do not like to tell people all the time about how much pain I am in. When they say you look good or you do not act like you act sick, I just smile and say thank you. When I get up from my chair or move around, they can see for themselves that I am in pain. Actions speak volumes to my family and friends.
I think much of the world (except derms) classifies PA as a form of RA. i think more people recognize the possible devastating effects of RA, so maybe it makes sense to either call it RA or cal it a form of RA. When I do a search on clinical guidelines for PA, RA often shows up! My father had poly myocitis...
go ahead... google...
or I can make it easy and say it's a form of muscular dystrophy.