Last week, I decided to leave almost all of my support groups or at least to stop visiting them. I had determined that they were just not meeting my needs and were becoming more and more unhelpful. It’s been a long time since I felt I was getting any benefit from them. I also determined that I was getting more support from people I knew personally who had no idea of the issues I was facing.
Over time, I began to feel like I was not getting what I needed out of my support groups. I would post questions that would get few if any helpful responses, if they got any responses at all. Many times, I would post looking for people experiencing similar things and trying to find out how their experiences were similar or different from mine. In those instances, people would respond with unsolicited advice that might not even be related to the questions I was asking. Some would even tell me to see a doctor when I specifically stated that I had an upcoming doctor appointment! Some groups had draconian rules like not allowing any sort of links to be posted. Oftentimes, I would include a link with my post that would back up what I was trying to say, or I would share a post from my blog that would keep me from having to retype my story or what I wanted to share about my own experiences. This rule to me didn’t make much sense. Couldn’t people as easily state something false as share a link with false information? Also, shouldn’t administrators trust that the group members can decide for themselves what they will or won’t believe? In another group, there were repeated reminders to members that the group was not a “clean-eating” group and that members should refrain from making judgmental comments when someone was asking questions about whether or not certain “unhealthy” food items had unsafe ingredients or could be cross-contaminated. I always felt bad when members would post asking questions about a favorite treat or something fun they wanted to try only to be greeted by responses that the food in question was GMO or had other “evil” ingredients like high-fructose corn syrup or artificial food dyes. The members weren’t asking whether or not the food was healthy. They wanted to know that the food was safe concerning their gluten or allergy issues. Of course, there were the usual issues with discussing things online, where you don’t have tone of voice, body language, or other cues to find out what a person’s intentions were with the words he or she chose to use. Compounding this problem is the fact that the person is a stranger outside of the group. Arguments could ensue where they would not if the conversation were face-to-face with a person you know or where you could at least hear the person speaking. Another minor but annoying issue was when I’d post a response to someone else’s question or comment, and I’d see that others’ comments surrounding mine would get likes or other positive reactions, but mine would get nothing. It had happened enough times that, along with everything else, it just added another reason for me to decide that it was time to quit the support groups.
What ended up being the last straw was a question I had asked on a message board about my various issues with dietary balances, my issues with having to balance copper with zinc and iron with vitamin E. I had also asked about my issues with iron supplements, that I just could not tolerate supplemental iron outside of a multivitamin, even with vitamin E to balance it. I could not even handle taking a 65 mg iron tablet with a balancing vitamin E supplement twice a week for three weeks. I started feeling worse, so I had to back off and go back to just the multivitamin. This was one that was especially baffling to me because I could find no personal experiences through searching, and a doctor I tried to share these findings with didn’t seem familiar with what I was saying. I wanted to know if others were dealing with similar issues and perhaps if they were able to share them with a doctor who was able to tell them if it was a certain condition or something else going on. Someone responded to my post, but it was basically to say that it’s better to get nutrients from food rather than supplements and other information along those lines. Nowhere in my opening post did I ask questions about supplements and whether or not it was better to get nutrients from food. In fact, this is something I already know and try to do; I just found I needed supplements to help correct deficiencies that a diet I thought that was as healthy as I could make it just wasn’t able to correct alone. I tried to go back and restate my original question, which I also had to do in a separate post of mine to which this same person also replied. While I was extremely disappointed and frustrated by the person’s response, I figured she meant well and was trying to help, so I tried my best to respond to what she was saying. However, throughout the discussion, I got the feeling that she was continuing to push the whole “diet over supplements” idea, even though I had said that I needed the extra supplementation in spite of my healthy diet. I figured that other issues outside of my diet, like my hypothyroidism and MTHFR variants, might have been playing a role in my increased need for certain nutrients. Finally, I just said the following, “I think I do eat the appropriate foods and have a healthy diet. I just need a little extra help. I go back to my hematologist in October for monitoring and follow-up.” That was my entire reply. The next day, I found out that I had gotten a message from an administrator warning me that I should not post to argue. My comment was also removed from the thread. I thought this was unbelievable! I could not conceive how someone could infer that I was trying to argue from the comment I posted. What could the other person possibly argue? She couldn’t say that I was not eating an appropriate diet because she has no idea! I decided that I would not even post any more follow-up comments on other threads and not even visit the message board site again. I could never be sure that anything else I would say would not be taken the wrong way, resulting in additional warnings and possible banning. I certainly wasn’t going to second-guess anything I might want to say or try to walk on eggshells for the benefit of a bunch of ultra-sensitive people. Since I could not delete my account, I decided that I would just never log in to it again.
Shortly after I began posting responses to the other person on the message board thread mentioned above, I decided, out of frustration, to leave just about all my support groups on Facebook. I remained in one that I managed and another where I knew many of the members personally. I thought I would go back and add follow-up information to my existing posts on the message board but not post any new posts, but after the insult I received there, I decided just not to post there at all or even read any other posts there. I never went back and read the rules, but I wondered if my ability to post freely without administrator approval had been revoked after that warning. If it had, I certainly wasn’t going to post anything else and then have to have that approved, just because of the simple comment that I had made that was misconstrued by the person who reported it and/or the administrator.
I’ve always felt lonely because I was going through health issues that others around me just didn’t seem to be dealing with. Apparently, the people in the support groups weren’t experiencing or understanding them either. However, with the people I knew personally, I was able to share with them face-to-face about my issues and answer any questions that they might have for me. It was rare that I ran into someone who didn’t treat me well or didn’t want to listen. Even when chatting online, we of course knew each other and could better infer intention and tone from things that were said. I vented to my friends after the message board incident above, letting out my frustration over getting a warning on a comment that should not even have raised any sort of red flag, and they were all kind and understanding. I realize that even though my family, friends, and others I know may not be dealing with the issues I have or even understand them, they are actually the best support. We have found ways to be there for each other because we’re all dealing with issues. They’re all different, but we all suffer just the same. We can lean on each other, support each other, and pray for each other, no matter what our issues are.
Online support groups just didn’t end up being the help that I thought they would be. I’m actually quite happy that I ended up leaving most of them behind. I plan to lean on the people I know, my family, friends, doctors, and others, for the help and support that I need. I’m also thankful to God for the help that He has given me over the years of uncovering and dealing with all of these issues, and I will continue to lean on Him as well.
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