December 14, 2013

Lay People Teaching People with Diabetes

I have said this before and I will probably repeat this until I die. Lay people (people with type 2 diabetes and not possessing titles behind their names) often do more good in working with other people with type 2 diabetes than certified diabetes educators (CDEs) or nurses will ever be able to do.

In a conversation recently with one of our local doctors and amongst our own group, we have found out that the level of education, but not the specialization in diabetes education, is the greatest asset we have. Not all the members of our support group have completed college, but many have. Another asset we have is experience with type 2 diabetes and desire to help people. This often pays dividends.

The doctor felt much of our success has come from our desire to help others. He added that our level of research is important and probably the fact that we are not tied to the dogma of any organization has served us well. Allen said yes to the last and added that we don't believe in secrecy and hiding our diabetes from those that we talk to and attempt to help. Jason said that our willingness to share and bring other members into the conversation has also helped and made people we are trying to help know that where one person may not have all the answers, another person may be able to compliment another member of the group.

Sue made the statement that having come from the side of being one of the 'diabetes police' has been a great advantage. She knows what could have happened and did not happen to her, and feels that she has a better awareness of the stereotyping that exists because she had been guilty of doing this. Being one of only two women in our group and receiving the support of the group has taught her many things she would probably not have learned in a largely female group.

Brenda agreed saying that the men in the support group do most of the research and share the information. While she felt that many women would do more research, our group was unique because she and Sue did not have a lot of time for research, but were not excluded because of that. Brenda commented that the day Sue was welcomed into group, made her realize she was part of a group she wanted to remain active in and participate when she could.

The doctor was not aware of this and asked Sue to explain what had happened. Sue knew her husband; Bob wanted to tell the story, so she let him. Bob said that often Sue would be the diabetes police and be pestering those with diabetes about their food choices and telling them, they should not be eating that. Two days after her diagnosis, many of the group were together at a function and several had noticed that she was not loading her plate with deserts and were inquiring the reason.

Bob said he took the opportunity to out her as now having type 2 diabetes. He admitted that he was thinking that she was going to be paid back for her activities, but instead questions were asked about her diabetes and support offered to help her accept her diagnosis. He said she was angry with him for having said anything, but he was excluded from the conversation and all questions were directed to her. After she had tried not to answer a few of the questions, the group had explained the process (similar to grief) she would be going through. They said that when she was with the group, secrecy was out and questions she had would be answered.

Bob then said they told her not to be angry with me as she had enough anger about her diabetes. They said that his telling us about your diabetes was the best thing for her as now she could not keep it a secret and this would allow them to provide help and answer her questions. Bob concluded that the group had lived up to this and had helped her get off her medication and provided ongoing support to help her stay off medications. He continued that then they directed their attention to me and what I needed to do to support her in managing her diabetes.

Sue said they even taught her about the myths she had believed and how wrong they were. She said that the biggest lesson she learned was that being on insulin did not mean they were near the end of life, but living better because of insulin. Sue felt that because her husband was learning about diabetes and supporting her, when he was diagnosed with pre-diabetes, he was just accepted as part of the group.

Tim said that we welcome family members, but will not let them be like some people that run down the group and always have something to say that is against people with diabetes. He stated one support group that Jason, I and he had attended, one family member stood up and berated the people for not telling his wife to get over her diabetes and start doing the things she should. Tim stated that as a group, we will not allow this and will ask the people to leave saying that the person with diabetes is welcome, but that they are not. We believe that support for each other is everything and we won't tolerate this behavior.

The doctor said that must be the reason his group likes meetings with this group and feel welcomed. He said that the emails sent out after the meeting is greatly appreciated by those that were not able to attend. Brenda said this is done for all members when we have an email address. The doctor said he needed to leave and he now understood more about the group and our desire to remain independent from people in the medical profession. Tim said he was always welcome because he was not pushing the ADA or other dogma at us.

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