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Do you sometimes feel that no one understands what you are going through with your illness? Does it often seem that you are alone in your struggles? If you answer "yes" to these questions, you might want to check out the types of support networks available in your area for people who have the same health challenge as you.
My Swim Strokes
In my first book, I shared how my doctor encouraged me to join a support group. She told me that my friends and family would have a difficult time understanding everything I was experiencing. She said that a good support group could connect me to people who had similar issues as mine and who, thus, had a greater capacity to listen and share the frustrations of dealing with a disease that doesn’t go away.
The first thing I did was to call up my local Arthritis Foundation and ask about groups meeting in my area. I began attending a local group, and I found that my doctor was right. Talking to these people really helped me cope better. I learned that other people shared some of the same feelings of frustration that I had once thought were unique to me. This group experience also allowed me to learn tips from others in the group. I learned ways to manage my activities of daily living which had become more difficult due my chronic pain. For example, I learned to manage my time and my energy level more efficiently so that the most important things in my life received the attention that they deserved.
Barriers to Entry
There are several misconceptions about support groups. The first is that support groups are full of complaints and critiques of medical professionals. Let me be the first to tell you that one of the primary functions of a good support group is to help individuals not only regain a positive outlook, but also to introduce them to many medical care providers that specialize in the areas of their illness. For example, when I facilitated the Parkinson's support group at Brookhaven, we frequently invited speech pathologists, physical therapists,and nutritionists to come and speak to the group. This gave the participants and their caregivers the opportunity to be introduced to new therapies and research that they might otherwise not have access to unless they scheduled an appointment. There are many obstacles to scheduling an initial appointment with these providers: finances, insurance, time, just being a few. Through attending the support group, members received a free orientation to these services. In the end, it was a win for the participants and a win for the provider. Support groups are all about building partnerships: between the members, the organization, and the medical community.
Another misconception (and one that frequently deters people from attending a group) is the idea that they will be required to talk. Many people fear speaking in front of strangers, but they can achieve many benefits of support without having to share their thoughts right away. Of course, there's nothing like the validation that comes when a person shares a problem and hears that other's are feeling the exact same way, but this is not mandatory. A positive support group does not obligate it's members to talk; often there will already be enough on the agenda to cover the allotted time.
Professional Observation
Later, I was asked to lead one of these groups, and eventually helped start a group of my own. I saw how the group experience helped people recover their self-confidence and their feeling that they could still achieve their goals. However, this could only happen if these goals were realistic and adaptive to their own unique limitations. In the “Swim Strokes” chapter of my book, Life On the Deep End, I explain:
“Thus, by reaching out and giving of myself to others, I began to regain my own sense
of self-worth. I also learned that in the right environment of mutual acceptance and respect, a person who is hurting physically and emotionally can find a way out of fear and isolation, at least temporarily.” (Steen, 2018)
More Support for Support
According to an article on The Mayo Clinic site, support for support groups with the following benefits:
Feeling less lonely, isolated or judged
Reducing distress, depression, anxiety or fatigue
Talking openly and honestly about your feelings
Improving skills to cope with challenges
Staying motivated to manage chronic conditions or stick to treatment plans
Gaining a sense of empowerment, control or hope
Improving understanding of a disease and your own experience with it
Getting practical feedback about treatment options
Learning about health, economic or social resources (Mayo Clinic, retrieved, October 2018)
What are the “waves” that are challenging you in your own illness? Perhaps finding a good support group might help you “swim” right through them. There is no time like the present to find a group and begin developing your own set of “swim strokes.”
Here are some links to help you find a group in your area:
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