Support groups, one of the online programs offered by Osteoporosis Canada, are all about connection. They connect people who not only live with osteoporosis but want to live well with osteoporosis. Each monthly meeting is another opportunity to share knowledge and concerns, to encourage each other — and to just plain spend time with people who know what you’re talking about, because they are in the same situation.
Feedback describes how powerful group participation can be:
- “It’s wonderful to connect with people who share the same experience.”
- “I feel privileged to take part in a group. This is a lonely disease if you don’t have a support system.”
- “I feel so much more confident now, armed with the knowledge, support and friendship I’ve been given over the past year.”
The Basics
OC’s support groups are managed by Sandy Owczar and Cathy Pearcy, the organization’s two Managers of Community Engagement. Though all groups meet virtually rather than physically, they are with two exceptions broken into regional categories. “This allows discussion in each group to be specific to its own context,” explains Cathy. She adds that the two non-regional categories — Under 40, and Men With Osteoporosis — are also context-specific. “Men face some different issues than women do, often work-related, and people under 40 are also in different circumstances because they are still in the child-rearing and career-building stage of life.”
Each group holds a one-hour meeting every month, via Zoom. A few groups are coordinator-led; most are facilitated by a trained volunteer who either has osteoporosis or has a close connection. Membership is free, and people may remain part of a group as long as they wish.
How to Join – and When
How to join is straightforward. Click the support-groups link shown below; click the appropriate category; and fill in the pop-up email addressed to one of the Managers. Include some basics about your location, circumstances, and diagnosis, both what it is and when your diagnosis was received.
When to join a support group is not as obvious as how. The Managers want to know about your diagnosis, because that information tells them where you are on your journey with osteoporosis. Says Sandy, “That helps us suggest which OC resources will be most useful for you right now.”
Brand-new diagnosis? Call the OC telephone support line; register for any or all of the online webinars (Bone Health 101; Osteoporosis and You; Living Well With Osteoporosis).
Once you’re past that first shock, once you have acquired some information and you feel ready to explore how to live well with the disease — this is the time to consider a support group. Members themselves decide what topics to discuss and are free to participate as much, or as little, as they wish.
It’s your personal journey, but you might like some companionship along the way.
Support groups: https://osteoporosis.ca/support-groups/
Other online programs: https://osteoporosis.ca/programs/
Telephone support: 1-800-463-6842 (Canada only)
Reaching Out: A Support Group Story
After my diagnosis, I felt angry, scared, and overwhelmed. I had just moved to a small, rural community while the pandemic was in full swing and was feeling lonely and isolated. At my doctor’s suggestion, I went to the Osteoporosis Canada (OC) website to learn more about this disease. I discovered so many new things but had lots of questions.
One day, as I was checking out the OC website, I found the “Get Involved” section on OC’s homepage. I moved my cursor over it and spotted, “Get Support” and “Support Groups” in the drop-down menu. I clicked on “Support Groups”, read the description, and knew right away that I had found what I was looking for: a way to connect with others who had osteoporosis while keeping myself safe during the pandemic. I clicked on the group in my area and sent a short email to the address that was provided. I had a very friendly and quick reply from the group’s manager and attended my first virtual osteoporosis support group meeting shortly thereafter. It has been 16 months and I’m still there!
I was a bit nervous about attending my first meeting, especially because it was on Zoom, and I’d hardly ever used this platform before. But the welcoming and supportive group helped me learn the basics of Zoom. They made it easy. I listened closely as people shared their thoughts and experiences. Some group members had faced multiple fractures, and some were still recovering from them. Others, like myself, were fortunate enough not to have had any fractures (my fingers are still crossed). I was glued to their every word, hoping to figure out how to avoid having a fracture or what to do if I did.
A lot of learning has happened since then and I’m still “glued” to their every word. Sometimes, I even share my own bits of what works for me. Here are some helpful things I’ve learned from my support group:
- Change can happen over time. Changing too many things at once can feel overwhelming.
- Scatter exercises throughout the day, doing bits at a time. You can even do some balance or strength training while you are brushing your teeth or waiting for the kettle to boil!
- Sitting is really hard on the spine. Find ways to get up and move around every 30 minutes.
- Give your spine “time off” in the day. Lay on your back on your bed (or the floor) for 10-20 minutes.
- Use walking poles to help you get the weight-bearing and cardiovascular exercise you need without putting too much pressure on your joints.
You don’t have to be alone with this disease. You can reach out and get connected with others who understand what you are going through. You can join one of Osteoporosis Canada’s support groups today!
Warmly,
Jackie Herman
Credit: COPN, the Canadian Osteoporosis Patient Network is the patient arm of Osteoporosis Canada, a national network of people living with osteoporosis.
