Continuing from my previous article the following looks at the types of support groups that are available and potential challenges in joining a group. Again, this article is from my own experience and based on two questions on pain in 2012:
- Are support groups necessary?
- Aren’t they just a stagnant group consisting of a stream of complaints, commiseration, and occasional messages of hope and encouragement?
There are many styles of support groups. Some offer a ‘therapy’ style, and I see those as a more personal ‘bringing issues into the open’ approach and lasting a set number of group sessions or a specific amount of time. There are groups which offer a social gathering with information and the occasional guest speaker. Then there are the groups which I found more suitable for what I was looking for – guest speakers; access to a network of services, workshops, and courses; social activities.
Looking at each type of support group in more detail, first I’ll start with the therapy style. Whether it’s sitting around in a circle saying what your challenges and okay times have been like during the time between meetings. Timeframes can vary from week, fortnight or monthly depending upon the group and resources available to run the group. There are many variations of meeting protocol, with doctor or self-referral depending upon the group. Within this type of group I find retelling ‘one’s original story’ can potentially reinforce the illness and send energy plummeting. Likewise, when discussions start to become circular with no fresh information or strategies, or when you start to have a ‘spiralling down’ instead of a ‘lifting up’ effect it might be time to rethink the ‘therapy’ style group. Some therapy groups are prescribed for specific medical or health conditions towards a defined outcome and your progress is likely to be monitored. In this situation your intention to leave this type of group would need to be discussed with your prescribing practitioner. Whatever reason a therapy-style group is chosen it’s important to feel that you’re moving forward and gaining confidence.
Where support group members have been attending meetings for years the gathering may evolve into more of a social group. The group might meet in a room, a café, or club with the focus on chatting about coping or otherwise with their health condition, information from the facilitator or a guest speaker, and the remainder of the time spent chatting generally over a cuppa. With this type of group a new member can feel a little on the outside – like being at a friend’s party and the only person you know there is your friend and everyone else is talking about their mutual friends and interests. As there are different personality types an outgoing person who once liked this style of social interaction can find that their former circle of friends no longer exists for a variety of reasons. Therefore, this more social style support group might be a valuable way of establishing a new social network with people who understand what it’s like living with chronic pain or other health conditions.
The groups to which I am a member (Chronic Fatigue Syndrome/Fibromyalgia; and Pain Support – which are open to anyone with chronic pain, family, carers and friends) both offer a one hour talk which can be on medical or health related services, latest research, meditation, tai chi, other mental or physical modalities, and on a whole range of topics. Half an hour is allocated for optional socialising usually before a meeting and often ‘bring your lunch’ or a snack is encouraged. Sometimes, but not always, this informal time evolves and some people might talk with another member about personal trials and tribulations of coping with their condition, though the groups do not offer personalised medical or health advice. Groups recognising members have limitations due to pain and mobility constraints therefore one does not have to remain seated – standing up, walking at the back of the room, or lying down are options. Other considerations might be around smell-sensitive (no perfume or strong scents), dimmed lights for light-sensitivities, or volume and types of sounds for hearing-sensitivities etc. At times meetings are off-site and have included outings to the art gallery, and picnics in the Botanic Gardens and other activities. Each year a day, a week or a month promotes various health conditions and I have found that the support groups I’m a member of have embraced awareness campaigns organising social or educational activities to highlight various aspects of the disease, condition, or symptoms.
A benefit of being a member of a support group is that appointments with a doctor are all too brief and may be limited in how much can be discussed over and above immediate medical issues and needs. This also means that those appointments are less than conducive to finding out how to live well with a health condition. Even if you have a medical or health professional who is happy to offer a long appointment to enable you to not feel rushed in conversation, they are not a substitute for effective social contact. The support groups that I have explored offer generalised health and management information and social interaction for minimal yearly membership. I have also found they provide an opportunity to find out more about what is offered in health organisations and the community to help you manage your condition more comfortably and live well.
Support groups have their place. I know it can take a great deal of courage to accept that you may benefit or need to be part of a support group. Any anger and denial process related to discovering a potentially massive change to one’s life is that, just a process to go through. Seeing others in the group at various stage of acceptance and moving forward with coping strategies, and all the other therapies and interventions in either resolving or managing their conditions, is very helpful. It can be what is needed to discover life anew. My suggestion would be to check what a support group offers and go along to at least a few meetings remembering that they will be dynamic and therefore slightly different each time. and with anything in life make a decision based on what you are looking for – therapy, social, or informative – and enjoy the interaction.
© Suzanne Newnham May 2019 https://suzanne-newnham.com
Suzanne Newnham has lived with pain all her life. Since 2007 extreme hypersensitivity to sound has impacted every aspect of life living with intense chronic pain and other symptoms.
She is co-founder of Pain Support ACT inc, member of the Committee and advocacy group from 2010-2017. Suzanne, a published author, writes in a monthly magazine about strategies, latest research and techniques, as well as ways of looking at the complexity of living with chronic pain; and contributes articles for other magazines. For more details re advocacy, and access to articles https://suzanne-newnham.com
Date published: 4/6/2019
Last updated: 9/9/2019