Explaining Rheumatoid Arthritis to Friends and Family
Explaining rheumatoid arthritis (RA) to family members can be emotionally draining. While many members of myRAteam receive tremendous support from loved ones, others face family who struggle to empathize or even express skepticism about their condition. Other members provide support during these challenges and offer suggestions for improving communication and relationships.
When Family Struggles to Cope with Rheumatoid Arthritis
It can be helpful to remember that family members may be struggling to deal with your diagnosis. Fear, anger, or sadness may be impacting their behavior. “Spouses or family members get frightened when we have medical issues,” one member commented. “They don't want to believe it because it scares them.”
Members suggested leading with empathy when a spouse or family member acts unsympathetic. “When he dismisses how you feel, walk over and hug him,” a member recommended. “Say, ‘Honey, I know this is scary and difficult for you to accept. I love you and I am scared too.’”
Counseling, on your own or with a family member, can be helpful when dealing with marital or other family problems.
Another common recommendation is bringing family members to doctors’ appointments. “Have your husband go to your doctor with you so they can explain things to him,” a member wrote. One member shared that an explanation from her doctor helped her husband understand the challenge of RA: “My husband wasn't [understanding] until my doctor asked him if he could break his fingers then have him try to do work.”
Another member suggested introducing partners to myRAteam. “I highly recommend sharing this site with family members. My husband understands so much more now and knows I wasn't just being lazy for the year I was figuring out which meds worked,” a member wrote.
Educating and Communicating about Rheumatoid Arthritis
There is no one right way to educate your family about RA. Members share what’s worked for them to help others on myRAteam.
“I am trying to educate my extended family about RA,” one member wrote. “One or two of my nieces asked me why I was telling them about it in depth and I told them because we share the same DNA they might get it themselves. I wanted them to know what to look for so they can have an early diagnosis.”
“I gather brochures from the rheumatologist's office to distribute to people so I don't have to keep repeating myself,” another member shared.
Understanding the experience of RA can be even more important than understanding the science behind it. One member shared the “Spoon Theory” to help explain living with a chronic illness to family.
Another member has a script for explaining why RA can prevent her from participating in family functions. “I say ‘I have a limited about of energy each day and I just can't (insert activity here) even though I'd like to.’”
Sometimes members find they need to develop a new vocabulary to adequately convey their experience to family. “I actually try to invent new words and descriptions because tired, fatigue, exhausted, simply don't cover it,” a member wrote. “I have said before and it bears repeating, RA feels like defying gravity is too hard.”
Talking to Kids about Rheumatoid Arthritis
Talking with children about RA can be nerve-racking. As a parent or grandparent, you don’t want to scare a child, but it’s also important for them to understand your limitations or needs.
A simple and straightforward explanation can sometimes be best. “I explained RA a little bit more and why grandma can’t do some things,” a grandmother on myRAteam reported. “The youngest couldn’t crawl on my lap and stay for hours on end like she used to. That was the hardest thing for her to understand.”
On myRAteam, the social network and online support group for those living with rheumatoid arthritis, members talk about a range of personal experiences and struggles. Explaining RA to family members is one of the most discussed topics.
Here are some question-and-answer threads about discussing RA with family:
Here are some conversations about discussing RA with family:
“None of my closest family really understand my condition and how serious and limiting it is.”
Can you relate?
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