Mary Shomon: Have you ever attended an in-person thyroid support group meeting? Did you feel it was more or less useful to you than the alt.support.thyroid newsgroup?
Lois is the only member interviewed who has actually met with a group of fellow patients. "I had an opportunity to get together with a few of my fellow newsgroup members once, and it was great to talk about our experiences face to face. It was a personal sharing and social event, so I can't compare it with the newsgroup in terms of usefulness. Fatigue can be a symptom of hypo or hyperthyroidism, and when you're too tired to go out, you can always go to your computer and talk to people in an online support group. You don't get the real-life connection, but you don't need to dress up or be anywhere at a specific time; just turn on the computer, and you're connected."
Convenience is also an issue for Mag, who said "the closest one meets in the evenings, and night driving is too difficult for me. I think they are wonderful, in theory, but can be hard to fit into busy lives, especially when your health is compromised. I did recently have lunch with a wonderful lady I met through the bulletin board, and it was great to put a face with her name."
None of the other members have had the opportunity to attend an in-person thyroid support group meeting. John believes that people are more open on the Internet than in person. "I don't tend to function well in groups larger than 3 people, in person, but I can do much better on the newsgroup most likely because of the anonymity and privacy it provides. I think others are pretty much the same way. We only expose as much as we feel comfortable with."
Mary Shomon: How has alt.support.thyroid personally changed your life?
Lois feels that it's changed the way she approaches her health. She says, "Even the best doctors can't know everything, and I don't expect to get all my information from them. I do my own research, I talk about health concerns with other informed people in alt.support.thyroid, and then I discuss my health with doctors. I ask a lot of questions, and sometimes I ask for specific tests. If a particular doctor can't help me, I keep looking. Until I came to alt.support.thyroid, I didn't realize that I could be hypothyroid with a TSH of 4.2, even according to many articles by mainstream doctors, and I wish I'd known this much sooner. My health is my responsibility, and I've learned how to take charge of it. I've also learned to apply critical thinking to health information and options, both mainstream and alternative."
Elaine has similar kudos for the group. "It gave me my life back! During the last fifteen years or so I've gone through periods where I felt better, but never where I felt "normal". The essential things I learned from the group were to get my TSH below 2 and To push my doctor to add Cytomel. It taught me that it was important to be assertive with the doctor and become an active participant in my own care and that of my daughter. It helped force myself to get through all the confusing physiology and learn more about the tests and what they meant - to read more (including every word of thyroid.about.com). I now know what it feels like to be 'normal' I keep up with the group because I see so many people who were at the point I was years ago, and I hope I can keep as many people as possible from going through wasted years. I also know that I'm not immune to setbacks, and it helps to work these out with the group."
Information was critical for Sara and Lucy. Says Sara, "It has pointed me in the directions that I needed to become really informed about my medical conditions. It has also offered me an outlet through which to share information I have learned so that I can help point others in helpful directions. I think that this dual purpose has been instrumental in helping me find my life direction, which is to help others with their health through a form of mind/body therapy called Quanta." According to Lucy, "I was given valuable information on T3 - which I'd never heard of before - I did some research and see my GP - who then gave me a prescription for T3!"
Mag found the opportunity to vent "sanity saving," as she puts it. "A disease with as wide a spectrum of severity as Graves and Thyroid Eye Disease (TED) is difficult to explain to family and friends. They all have "met someone with Graves whose eyes are fine, why don't you do what they did so yours will be?" and that is so isolating."
And for John, "I guess it would have to be helping others resolve their own issues with thyroid disease AND in the process I have to do a wee bit of homework to make sure I am giving good information ( so much so that I have had one doctor recommend that I go back to school to become a Physician's Assistant because I already know more than most of his colleagues on the same topic ). The newsgroup can be a very educational place, if one is to spend a wee bit of time there. You can learn and not really notice that you are doing so."
Mary Shomon: What do you think the strengths and benefits are of Alt.support.thyroid?
Diversity, support and information are the common themes when members discuss a.s.t.'s strengths.
Says Lucy, "I think a.s.t. has a group of very intelligent people on board, who care and understand that it's not always easy to find info and support on a disease that is often considered to be 'nothing' by a lot of people who don't suffer with it!" For Sara, "the strengths are the diversity of views and truly useful information and the very friendly and helpful attitude. I feel we have really become a family and that this support is so important to those going through health challenges that are often scary and misunderstood by the general public, not to mention by so many doctors."
Elaine feels that " it is the most supportive group I've ever seen. Many of us have had doctors look at some of our symptoms and say "I've never seen this before", or "I don't think that's related to the thyroid", or something else that makes you feel like a hypochondriac. Then you get to A.S.T and find out that whatever you feel is shared by so many people that it makes you wonder about the doctor and ask 'why hasn't the doctor seen this before?' Is s/he listening to his/her patients? A lot of the participants are research junkies. If someone posts a question, they answer with great sources from the Internet or books. It is rare that a question goes unanswered, even if the answer is 'I don't know, but I understand your frustration.' "
Lois finds that being able to connect and compare with people who have similar problems just about anywhere in the world is empowering. "In the group, there are some very knowledgeable people who have studied thyroid problems extensively. They don't know everything that doctors know, of course, but some of them know more about thyroid function and treatment than many doctors do. Collectively, we can quote from and provide links to many online articles about thyroid conditions, most of which are doctor-written. If anything is posted that's incorrect, or that's open to different opinions, others will comment, and a discussion will result. It's this aspect of alt.support.thyroid that makes me feel safe getting my information from this source. The people themselves are a tremendous strength and benefit. Even those who are just starting to learn about thyroid problems can offer support, and almost everyone appreciates and can contribute to the jokes and the playing. It's a fun place to be. "
Mag appreciates "the free sharing of information and support, the very knowledgeable people who take time to answer questions, and the 'allowing' of off topic posts."
And for John, "the greatest strength of the newsgroup is the number of people willing to share their knowledge and experience. I makes the disease a whole lot less scary, knowing other people have it and can tell you what to expect."
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