Need recommendationdation - How can I help other people understand my RA?
Fellow RA soldiers,
I’m new to having RA and as it has been increasing it’s affects I’m seeing that some of my challenges are that other people don’t understand what I’m dealing with and it’s hurting my relationships. Others don’t understand how my lack of energy affects my ability to invest in relationships, and why I’m not motivated to do things relationally that I used to, even though I wish I were. And they don’t understand that I wish I could be motivated to do so much more and invest so much more when my body lets me do less than what is considered minimum by others. I’m wondering if anyone knows of a book that I can give people in my family on this topic that will help them understand what someone with RA is dealing with and how they can interpret what’s happening so that it doesn’t destroy my relationships. Can anybody recommend something?
Hi,
!
Welcome to the community! I wish you didn't have need of a space such as this, but I am glad you found us. Educating friends and family about RA is a fairly common topic, here, so you I do hope you get some helpful feedback from other community members that have been where you are right now.
I don't have any book recommendations, but some of our contributors have written about how to explain RA to people in their lives and you may find their words helpful (and easy to share with others). Here's one that really covers the basics well, especially for people who don't know anything about RA -- https://rheumatoidarthritis.net/living/disease-explanation. Also, I like sharing this poignant letter written by one of our members to her loved ones, as I think it sums up life with chronic conditions like RA very well -- https://rheumatoidarthritis.net/stories/a-letter-to-my-family. I think educating the folks around you can be exhausting, but it can be worth it if it helps them understand your condition more and be more empathetic towards you. Clear communication can help them remember that YOU are not purposely doing anything to miss out on work or family events and it can help redirect their feelings of confusion or even doubt and judgement where it belongs -- on your illness, NOT you.
Again, I hope other community members can chime in with helpful suggestions and maybe even some book/article suggestions!
Thanks for reaching out and please don't hesitate to reach out if you have any further questions about RA or this site.
Best, Erin, Team Member.
Hi
. It is great that you are looking for ideas on how to explain the nature of a chronic inflammatory autoimmune condition, like RA, to others. First, let me say that Erin has shared a couple of our best articles on the topic and I hope that they are helpful. Given that, I want to head in a little bit of a different direction.
I happen to be the husband of someone with RA. My wife, Kelly Mack (a contributor here), was diagnosed at age two, 45 years ago - long before we met (she wrote about our meeting here: https://rheumatoidarthritis.net/living/surprise-relationship). When we met I knew little about RA, but I was willing to listen and learn. I say all this because I don't think there is anything special about me. It is not on you to teach others about autoimmune conditions. It is great (and completely understandable) that you want others to understand the nature of this disease, what you experience, and how it changes your abilities to do certain things, but you can only provide the information and the opportunity to learn - the actual learning is up to them.
I say all of this to illustrate that you can only do so much to get others to understand. I hope that those close to you do and I can tell you that one thing a chronic condition like RA will teach you is who you can count on. The primary responsibility you have is to yourself. Practice selfcare and do what you can to get your RA under control. Tell others what you choose about the condition and your personal situation and, hopefully they will understand and support you along the way. Please know that people here understand and that this community is here for you. Best, Richard (Team Member)
Relationships are complex in general, let alone managing them when you have the weight of a chronic illness attached. Both Erin and Richard provided links to some helpful information that I hope you have a chance to look at. I also wanted to add a thread of others who have shared their thoughts on this very topic to add more to the conversation: https://rheumatoidarthritis.net/forums/how-do-i-help-friends-and-family-understand-my-ra. And to add my two cents in, simply practice putting yourself first. Your health and happiness are just as important as anyone else’s. Taking care of yourself first doesn’t mean you’re neglecting anyone else, it’s the best way to ensure you can be present when you’re able. So live up to your own expectations and know that you deserve the space, the rest, and the care that you need to feel your best. When you take care of yourself, you set the foundation for healthier, more balanced relationships with others. Wishing you all the best, Latoya (Team Member)
