Dealing With a Lack of Social Support: RA Tells a Complex Story

For the third week of Arthritis Awareness Month, we continue our efforts in raising awareness about rheumatoid arthritis (RA). In previous weeks, we focused on topics like RA symptoms and diagnosis and treatment options. In this article, we explore a lack of social support for those living with RA.

But first, take our quick poll below. Does your family understand how RA symptoms impact your ability to carry out simple everyday tasks?

What is social support?

There is a common expression used by people living with chronic health conditions like RA. You may have seen it in comments from fellow members here in the RheumatoidArthritis.net community. The expression is "Unless you have it, you just don't understand."

Social support is a network of people who help you cope with biological, psychological, and social stressors. Simply put, your social support is the people in your life that help you through changes – the good, bad, and everything in-between.¹

Social support can be positive or negative

Positive social support can be physical. This can mean helping with household chores. It can also be emotional. This means things like listening without judgment. Social support can be negative, too. Negative social support looks like:¹

• A family member or friend who gives “advice” that feels more like criticism
• Unsolicited and insensitive advice
• Frequent comments like "Mind over matter" or "Toughen up"

Research shows that positive social support improves our physical and mental health. This is especially true for people living with long-term health conditions like RA.^2,3

Feeling dismissed or misunderstood

Members of this community have shared the importance of having the support and understanding of friends and family. However, it is common for people living with RA to feel misunderstood, dismissed, or isolated. These feelings may stem from:

• Fewer invitations to social events or gatherings
• The unpredictability of symptoms like fatigue or pain
• Unsolicited or inaccurate advice from others
• Declining get-togethers because of RA flares or limited mobility
• Inadequate accessibility for wheelchairs, canes, and other mobility aids
• Rude or misinformed comments
• Challenges staying present due to brain fog

Social support for those living with RA

Five Things a Flaring Friend Doesn't Need
Leanne Donaldson
"It might be very easy for you to think I’m lazy when the dishes pile up in the sink or baskets of laundry litter the floor. But I can assure you, I am anything but. If you had any idea of the sheer willpower and determination that I need to have simply to put my aching feet on the floor each morning, then there is no way you would ever think that I’m lazy."

Dear Friends, Family, and Coworkers: I Have Rheumatoid Arthritis (RA)
Lynn Marie Witt
"This article is for my dear friends, family, and coworkers. I wanted to let you know that I have a diagnosis of rheumatoid arthritis. If you're reading this, I hope you find this article on RA helpful. Let’s please use this as a starting point to further a discussion I would like to have with you."

“You Would Feel So Much Better if You Just ______.”
Mary Sophia Hawks
"I believe our friends try to “fix” us so that we can be their 'fun' friends again. Sometimes, I just want someone to listen, not to fix. I want someone to acknowledge that this life of mine is rough. I don’t want you to compare yourself to me. I don’t want to hear that you 'understand' my pain, because you don’t."

RA and the F-Word: Family
Daniel Malito
"Rheumatoid arthritis is hard on a patient. I mean, I know, understatement of the year, but still, true. The thing is, sometimes we forget what it’s like for those around us, those who deal with our illness every day but don’t ever get a diagnosis for themselves. Some of these amazing caregivers we can’t live without. Some, well, it’s a bag of mixed nuts on a good day."

True Friends
Monica Y. Sengupta
"Before, I was social and had many acquaintances. Now, I am way more introverted and have a handful of very close friends. I could probably only count them on 1 hand. And, that’s okay. I’d rather have 1 good friend who doesn’t judge me, checks on me occasionally, and knows me so well they can anticipate when I need help."