Recently, a great discussion happened in our RA Group: “What about your condition do you wish you could talk about with your friends and family?”
Many people chimed in with insightful comments that really shows the hardships those with RA have to endure. Out of all of them, here are the 7 comments that made the biggest impact.
“My son is a single parent and expects me to help him clean, do laundry and so on. I just can’t do it anymore. I realize he has his hands full, but I still work and clean the office where I work too. It’s just too much for me now. He called me today, while I was getting an X-ray on my hands and shoulders. Asked me to pick up a birthday cake. I did it. I will continue to keep helping for as long as I can, but he seems to have no interest if I am in pain or not.
He has three little kids – 11, 6 and one turning 5 today. He just called me and told me to hurry up and get over there before everyone gets too tired. It doesn’t matter if I’m too tired. It’s only 6 pm, so here I go. I’ve already told him that I can’t keep cleaning.”
“I wish I could talk about how afraid I am about the possibility of deformities and that this disease will likely cut my life short.”
“I would just like people to understand what I’m going through. I don’t want sympathy, I don’t want pity I just want someone to say I understand. And still, include me in things.”
“I wish I could tell them how scared I sometimes am. I feel my brother and sister wouldn’t care and my mom would just worry. I can’t talk about it at work for fear they’ll start looking at me negatively and watching for me to fail (even though I’m a long way off from being disabled!). I don’t really have anyone to share my anxieties with.”
“How I long for them to empathize, not sympathize. And to simply ask me how I am doing now and then, and then really listen when I try to explain (and NOT say, “Oh, I feel that way too sometimes.”) UGH!
Just tonight I was trying to explain to someone 10 years older than me about the struggles with RA and his response (with a wink), “I think we all struggle with little arthritis.” But I didn’t stop there I went on to say how it is different, how organs, eyes, tendons are also affected and that it is progressive without a cure. He seemed surprised, for a minute.”
“I want them to know how frustrating it is to want to do the things I used to do. How emotionally draining it can be from keeping it all inside.”
“It seems all I do is talk about it. To anyone who’s willing to listen, really. And I think it’s too much for some people. But aside from this group, I don’t have anyone who understands. And it’s all-consuming. It’s not like there’s a time when it doesn’t affect me. Even on good days. I just wish people could understand more. And understand that sometimes I have good days, and I can accomplish quite a bit. Then the next day I may be completely incapacitated. All while looking just fine on the outside. I think that’s one reason I talk about it so much. Because people can’t understand it so I always have to explain myself.”
If you feel like you cannot talk to your friends and family about your condition, join our Rheumatoid Arthritis Group, where you can share your concerns with over 20,000 people going through the same journey.
Is there one comment you relate to or is there something else you wish you could tell your friends and family?