Where is the "support" in "support groups" ??

When something traumatic happens, talking about it and sorting through those feeling is pretty vital to getting through it. Not everyone can do it right away and everyone processes it differently, but one thing I've learned is that it definitely doesn't help to keep your emotions bottled up inside.

I think I've mentioned before how my blog started. There was a psychologist at the hospital where I did my inpatient rehab. Everyone was required to have an evaluation from her and if they needed to, they could schedule appointments to sort through whatever feelings and troubles they were experiencing. I realized the importance of having someone to talk to, but I just didn't really connect with this individual. Instead of wanting to confide in her, I felt like she was prying and wanted to know unnecessary details of my life. She reminded me of the psychologists you see on tv shows sitting on a couch, with their glasses halfway down their nose...nodding with an occasional "uh huh, I see" and then asking "and how does that make you feel?" It was all too much for me. Plus, I had enough visitors that I wasn't having any trouble talking to people about how I felt and crying when I needed to.

Anyways, Dusty suggested that I start a blog because people at home would like to have updates on how I was doing and I could also use it as an outlet for my feelings...like a viral diary almost, haha. It was very therapeutic for me to write things out and to have it documented in order to look back on. I made a lot of progress in a short amount of time, so as soon as it started to slow down, I started to get discouraged and lose track of how far I'd come.

I spoke at a company Christmas party in December, titling my speech "Celebrating Small Victories." In order to write the speech, I went back through my blog posts. I spent hours reading about how I got to eat real food for the first time, when I was able to cut my sausage patty at breakfast, and the great success of finally getting my contacts in and out by myself. It reminded me of what a great tool having my blog was, especially when I didn't want to open up to a trained professional. It's not for everyone, and when it is, you need to find someone you feel comfortable with. If not, then find another outlet like I did with writing.

I've joined a few SCI support groups online recently and it's been eye opening for a number of reasons. Let me start with some the positives:

It's a totally different point of view when able to talk to someone who has gone through a similar experience as you and faces the same struggles on a regular basis. One of the greatest things I've done is get involved in various adaptive sports not only because I love adventure and trying new things, but I've made some incredible relationships. There's just something about being with other people that have had an SCI or are in a wheelchair. It's like that with anything- it's just easier to talk to someone that has been through it as well.

I like these groups because you don't feel uncomfortable asking others about personal struggles or posting pictures about a possible sore, wondering if you should seek medical attention or figure out a home remedy.  I've learned more from other patients at therapy or other individuals in these support groups than any doctor's office or institution I've been to.

I've also made new friends. Some that I've been lucky enough to unite with in person, others that I get to talk to from a distance.

I know there are a lot more benefits to groups like this, but lately, all I've been seeing are the negatives. I've seen so much criticism and downright cyber bullying...in support groups!! I really can't wrap my head around it.

There was a post from a girl asking for tips on how to make camping easier because she hadn't been in her wheelchair before. A lot of people offered advice, like what type of air mattress to use and the brand of tent they prefer, but a guy actually posted "simple, don't go. You're in a wheelchair." I can't make this stuff up.

I've seen so many threads like this and it is such a shame. Last night is what pushed me over the edge. A man posted a video of himself doing a 35lb leg curl. His injury level is similar to mine and I know I can't even do a leg curl with 0lbs, so this was pretty remarkable. He had gone to see a reflexologist and licensed massage therapist who is known for helping spinal cord patients regain voluntary movement...some after 20+ years! I don't really understand it, but he does five sessions/one week of therapy and somehow, the combination of touching the lower back and following his therapy regimen, people are finding new movement. From what I understand, people still have to put in the work and follow their exercise program, but there are individuals that are now walking after several years of nothing. There's a wide range of progress and success, just like with anything, but you can't deny how amazing the progress videos are. Regardless, people are given hope....hope they haven't found in a long time. Obviously, because there isn't any documented research or clinical trials explaining why this man's therapy program works, there is a lot of skepticism. That aside, this man simply wanted to post his progress. Something people do in these groups everyday. It gives each other hope and encouragement and also allows people to support the person posting and tell them to keep up the hard work. In my opinion, this is how a support group should work. Emphasis on the word support. (Am I wrong?)

There was a woman that kept commenting "scam!!" "scam! This guy is teaming up with the therapist to take everyone's money!" It was so uncalled for and really got under my skin. The man that had posted the original video tried to explain that a few members of the group knew he was getting this therapy and he wanted to share the positive results he was seeing after just one day. He even said he couldn't really explain what the therapist had done, but he was already grateful he decided to go. He tried to reassure this woman that he wasn't teaming up and forming a scam, just trying to encourage others, but the cyber bullying continued. I'm usually not one to comment on different threads with my own opinion. If I say anything, I try to just be encouraging, saying something nice or I'll post things that have helped me in the past. In no way would I ever send out accusations or criticism, questioning people's intentions. That's when you chose to just scroll down the page..

I commented, telling the guy that I thought his progress was amazing and if seeing this therapist is what got him there, then I don't see why people would scream "scam." I told him that we should applaud him for his hard work and encourage him to keep going. I got a lot of positive feedback for this and the guy was really thankful, because he didn't understand all the negativity and bitterness he was receiving.

After reading that this woman doesn't have an SCI and isn't in a wheelchair herself, I commented this: "If this hasn't happened to you, then I really don't think you have the right to act like this when someone was just posting their progress. Progress is progress and I think the video speaks for itself. There are people out there scamming others and it's a shame, but this guy posted his own progress to a SUPPORT group for SUPPORT. If you don't like or agree with something, scroll past it but don't rain on someone else's parade. Those that have and are paralyzed will do anything to get back what they have lost and I don't think you have a right to take away that hope" 

The man that posted the video replied by saying "very well said and much appreciated. Thanks for your understanding and compassion. I thought that's what this site was all about but I guess not everyone feels that way."

I really just can't understand why people feel compelled to say anything negative in these groups. Like I said, where is the support in support groups? Posting criticism or negativity creates a different atmosphere. It starts an environment where people don't feel comfortable posting anything because they don't want to be called out. This isn't how we should treat each other...ever, but especially not when we are supposedly going through the same things. I mean, when someone posts about a wound that they don't know how to handle, seeking advice and prayers, DO NOT comment about how you don't understand why they let it get that bad. What good is that comment accomplishing besides embarrassing the person that wanted help? It's heartbreaking. I really hate the way technology has allowed us to hide behind our computers, saying anything and everything that we would never dream about saying to people in person.

We really need to put ourselves in one another's shoes every once in awhile...and please, remind yourself of what you teach your children- "don't say anything at all if you can't say anything nice."