I'm sure we could add a few more, but this is a great list to send to family or friends who just don't get it.
- Oh, we all have our aches and pains!
My wife once made a comment as I was coming down the stairs "Here comes Frankenstein"...she was kidding and I laughed, but it is tough for others to understand the pain of this disease.
The you're too young one really gets to me. I was 36 when I was diagnosed, almost a year after my second child was born. In the world of autoimmune diseases, that's actually just right.
Oh, and don't forget, "At least it's not cancer". Really? Because I have had friends with cancer. The recovery process is very hard, and I wouldn't wish it on anybody. Once they are in remission, they may not have any daily reminders that they are cancer survivors. But this? I don't ever have a day where I am not well aware of my disease, and there has never been a remission.
Love it! Thanks for sharing!
A good one my aunt said (who's 95 and as fit as a flea)
"If you did more it would help you forget about it" yep, thanks for that lol
Some days when I try that, it just serves as a very painful reminder.
Louise Hoy said:
A good one my aunt said (who's 95 and as fit as a flea)
"If you did more it would help you forget about it" yep, thanks for that lol
This is a wonderful article, Marietta! I didnt look at who wrote it, but it must have been written by someone who has walked in our shoes. My family is really good about not saying those things to me as they are living this with me, and seem to have a good understanding. When I feel good, I shower and get all prettied up with makeup and nice clothes, my husband is happy because he knows that I am having a good day. His comments vary but the jist is that I must be having a good day and he wants to know if I feel up to doing something together. I love how intuitive he is! I speak to my wonderful, very best, awesome mom every day, and the first words out of her mouth are “what is your pain today”. She wants to know how it compares to yesterday and what activities I think I will be able to do, or if I am frustrated and sad. I am so grateful for my family. I would be lost without their love and their very real understanding of my condition. I am so very lucky.
Sorry, guys! I meant to talk about the article, but got overwhelmed with feeling instead! Back to the article, I am lucky that most of my friends are in health care, so they just ask me how I am doing and want to know treatment details, side effects, etc… They think differently than the general public does, and I am really glad. I would be hurt if people spoke to be like some folks do on that list.
When my best friend, Amanda was sick with metastatic cancer, I always tried to be careful want I asked of her. I tried to stick to how do you feel today. Because with chronic illness, it is a day to day thing.
We speak in code in my family. My response to the question how are you doing is either: bad = really hurting and want to cry, okay =hurting, i am aware of the pain, but i can still do a lot of the normal day to day things. Ther is pain, but I can handle it, or good= hurting but I don’t really notice it at all or I have aches and pains that would seem standard for the day after a work out. I can move freely and the pain isn’t the first thing on my mind.
Again, sorry I wrote so much! I got a little overwhelmed with emotion for my family and their love! 