This post was updated in February 2024 to reflect updated program dates.
It’s recently come to my attention that people have a lot of strong opinions about the concept of arthritis “support groups!”
As both a patient living with rheumatoid arthritis and as a trained health provider in occupational therapy, I’ve certainly see the “good, the bad and the ugly” when it comes to arthritis support groups. Since “support group” is not a medically regulated or official term, it’s hard to compare the benefits versus drawbacks of support group participation, since groups can differ drastically depending on many factors.
I believe in the power of arthritis support groups to improve quality of life, but they have to be structured and facilitated appropriately
After researching the effects of facilitated peer-support on wellbeing for people with chronic conditions, it’s been a joy to create and facilitate my own self-management and support group Rheum to THRIVE. I truly believe if structured, facilitated and moderated correctly, peer support groups and self-management programs can be a beautiful solution to the isolation, overwhelm, and confusing many (most?) newly diagnosed patients feel.
I’m not the only one that feels that way – the Mayo Clinic’s article about support groups for illness specifies that: “For many people, a health-related support group may fill a gap between medical treatment and the need for emotional support.”
However, they also do take time to specify potential drawbacks to support group participation, including “inappropriate or unsound medical advice,” disruptive group members or excessive complaining. That’s why I believe so strongly that support groups need to be structured appropriately to decrease the drawbacks, and capitalize on the many positive benefits of peer support!
Since my Rheum to THRIVE program registration is open now through February 12, 2024, I thought it would be appropriate to share some of the biggest myths and facts about arthritis support groups so that you can better understand them and make decisions accordingly. I’d love to know your opinions or further questions in the comments!
MYTH: Support groups are just a place for people to complain.
Fact: Support groups differ depending on how they’re structured and who’s facilitating them!
In Rheum to THRIVE, I include time for “venting,” but also spend time focusing on productive ways to still live a full life and thrive *with* rheumatic disease. I walk you through how to build a “THRIVE toolbox” to include tools for pain, fatigue, social effects, symptom tracking, advocacy, stress, coping, and other important “job skills” for the job of managing a chronic condition!
The goal is to build your self-efficacy, which correlates to overall quality of life for people with chronic conditions (Marks R. (2014). Self-efficacy and arthritis disability: An updated synthesis of the evidence base and its relevance to optimal patient care. Health psychology open, 1(1), 2055102914564582.).
At the same time, I feel it’s essential to hold space for people to be validated for their emotions around their experiences. So we do spend time sharing what’s happening emotionally with us in the here and now, and provide a compassionate listening ear that is focused on validation rather than problem solving.
Myth: Support Groups are always full of misinformation.
Fact: It all depends on the expertise of the person / people moderating or facilitating the group!
In Rheum to THRIVE, I provide evidence-based education. I use my training as an occupational therapist to help people sift through the often confusing information about rheumatic disease. I am extremely careful to point out potential misinformation, and point people to valid resources.
Myth: Support Groups are a good fit for every patient’s needs.
Fact: support groups are not the best fit for every single individual’s needs!
Support groups might not be for you if:
- You prefer to receive education and support in a 1:1 environment rather than a group
- You desire a formal therapeutic relationship (like seeing a psychologist)
That said, if you’re interested in a support group but had a bad experience with one group, I urge you to remember that not all support groups are the same (see the next bullets below). You might have a better experience in a different setting!
Myth: Support groups are all the same.
“Support group” is not a formal or protected term, so there are many differences between groups including:
- Expertise of the facilitator(s): Do they have any medical or counseling training?
- Structure: Is the group structured for education and emotional support, or only one or the other?
- Meetings: Are there live meetings or is support asynchronous? Online or in person?
- Frequency: How often does the group meet?
- Cost: Is it free or is there an associated cost? If it has a fee, is a sliding scale available?
Myth: There’s no evidence that support groups help people.
Results differ depending on whether groups are facilitated by medical or psychological professionals, but potential positive effects include:
- Improved Quality of Life “An exploration of the perceived effects of a support group for individuals with rheumatoid arthritis,” McCarron, A. (2015)
- Improved sense of empowerment and wellbeing “Participation in online patient support groups endorses patients’ empowerment” – C.F. van Uden-Kraan et al, 2009
The Mayo Clinic also shares the potential benefits (as well as drawbacks) of support groups, specifying that benefits include reducing the sense of loneliness, reducing distress, increasing motivation to manage a chronic condition, and gaining a sense of empowerment, hope and control.
Myth: I have to talk a lot at a support group meeting
Fact: Depending on how the group is structured, you won’t be required to talk. In most support groups including Rheum to THRIVE, people are encouraged to talk only when they wish to.
I’d love to know your thoughts!
Do you agree or disagree with anything I’ve said in this post? Do you have any follow up questions? Please let me know in the comments!
