After diagnosis of thyroid disease in early year-2003, I began to frequent forums for thyroid patients. I’ve always had a desire for helping to encourage other people in need and I believe it is a calling I have had since my youth. Part of that calling has also been my desire to teach or to help other people find knowledge that helps them.
I became involved in Thyroid Patient Advocacy shortly after I turned age 40 in 2003. I experienced a life-changing reaction to the onset of thyroid disease that in my case developed into co-morbid conditions as well, including Chronic Fatigue Syndrome, non-alcoholic fatty liver disease, worsening anxiety symptoms and increased symptoms from a heart murmur called Mitral Valve Prolapse (MVP-Syndrome/Dysautonomia). I knew from personal experience that people with thyroid diseases can go through serious struggles that can at times be extremely concerning to them and at times very discouraging. There is an increased rate for depression and suicide among people with thyroid disease and this fact alone shows the importance in support and information sources for them.
After frequent posting on forums for about two years, I began writing articles online as well for a number of websites and in the year 2005, created a website where I posted these articles, so that readers could find them at one location. Some of my articles were published by Tracy Green, the former Editor for BellaOnline – Thyroid Health, which she continued to feature on the site from 2006 until I replaced her as Editor in early 2008. I actually waited about 2 months before applying for the Editor position, following her resignation because I saw the site as having great potential as a resource for thyroid patients that needed another qualified person to continue running it. While I enjoyed contributing to sites or even creating ones where I could categorize my articles, I wasn’t sure if I was right for actually running one that had so many readers dependent upon it. If you’ve heard other versions of how I ended up applying for the editorship here, you’re reading the true version right now.
At one point, I was told things about other Thyroid Patient Advocates that were seriously negative in regard to things they had done to hurt fellow patients. I regret that I believed those negative reports that actually caused me to shun their information and not direct other thyroid patients to it for a period of time. I regret having fallen for what amounted to gossip but at the same time I learned a valuable lesson in keeping personal feelings to a balanced minimum in the area of Thyroid Patient Advocacy. I also wrote one of the persons in question and apologized for being swayed into the negative press about them. I now simply don't refer fellow patients to any source I feel will not be helpful to them and will leave my personal feelings out of it.
I have also learned that thyroid forums for example, as valuable as they are, must remain foremost on a level of support and information with the social aspect having some limitations. I say this because people tend to form very strong friendships on forums and while there’s nothing wrong with this in-balance, it also presents stronger opportunity for people to be hurt. There are members of forums I frequented in the past who told me they actually spend more time with forum-friends than they do with their own families and felt closer to them than to their physical family. This in my opinion should not be the purpose of “patient-forums”. Social forums on the other hand can go as far as they like in developing relationships between members.
Patient forums can certainly have social topic-areas if these can be restricted from affecting the areas of the forum intended for information and support to patients who come to the forum in need of it. It was my experience at times, in seeing social areas of patient forums being used to discuss personal type information about members, things that had potential to be extremely hurtful to them had they known about it. These type things can occur even while good things are also being done on a forum.
The respectful view of fellow patient forum members is to recognize their right to post as little or as much as they like and to also reserve any personal judgment about them. In regard to frequency of forum-posting expected of members; retired people or those who don't work due to being on disability, obviously have a great deal more time to post than do we who work more than full time and have to squeeze our forum time in.
Certainly non-patient type forums on controversial subjects like religion, life-choices etc… will have understandably heated discussions but patient forums need to have that ongoing welcome and support aspect to them because suffering patients in need of help deserve no less. I have also frequented a number of very good forums in the past that had all of the good qualities for helping patients in need and were not involved in any hurtful activities.
Fellow thyroid patients and fellow patient advocates deserve respect and the opportunity to share information and support without serious hindrance from negative things such as those I describe above. As for me personally, I will not stay involved in a forum that has ongoing negative aspects involved in it, whether it is between members or behind the scenes in discussions that take place in restricted areas. Forums can be wonderful avenues for helping patients with health disorders/diseases and this will always be the goal here at Thyroid Health.
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