I was just going to do this as a facebook post on my page dedicated to my HSCT journey, but I decided to put this out on the blog as well for those who just solely read the blog, as this is a topic that has come up numerous times on facebook groups. This is also something that several people have asked me about after I had my treatment, wondering if the secretive forbidden HSCT Veterans group held the answers. So I have the answer that everyone wants to know and even then a lot of people don’t believe this answer anyways, but whatever.
And what is this amazing answer….Well it’s simple really, once people have the procedure done they don’t feel the need to contribute on the facebook groups anymore. And for those who have facebook pages dedicated to their procedure or blogs, most focus on their recovery and real lives and just don’t bother posting regularly anymore, so it becomes very sporadic or not at all.
I realize that for those planning to undergo HSCT or those who are researching HSCT desperately want to hear updates from those who had the procedure done, they want to know if it was a success for them or a failure, what their recoveries were like, etc. Many people assume that people stop posting on groups, pages, or blogs because their procedure failed, which is the case for some people, but most really just don’t bother with those things anymore.
You may ask what is the reasoning behind this suddenly avoiding facebook groups and I think the main reason for this was expressed by a lady I was treated with in Russia. She said that after she got home she was basically going to avoid facebook and all the groups. Why? Well because most people use the HSCT groups to just find out how to apply for the treatment and to ask questions prior to going for treatment, once you have the treatment done there is no real reason to post on the regular groups anymore. I find this true for me as well for the Russia HSCT group that I am a member of. I hop on there once in a while and answer questions for those who are planning to go to Russia soon, but really there is no other reason for me to be a member of the group since almost every question pertains to those planning to go, asking how to apply, or wanting to know how dates are coming along. And even then most veterans do not actively even participate in the HSCT veteran’s group because unless you have problems or questions there is no reason to be bothered with groups. And then once the initial 1-2 year recovery period after HSCT is over, most people have moved on with their lives and their recovery and don’t want to be bothered anymore with the groups.
Is this selfish? Yes and no. Yes in the fact they are no longer sharing their journey with people and letting people know if the procedure worked or not and how their recovery is going. No in the fact that it is their life and most people want to move on with their lives and not dwell on their MS (or other autoimmune disease) and want to focus on their recovery.
For those with higher EDSS scores and that have more problems with mobility they tend to really jump into therapy and rehab as soon as they can. Many spend a great deal of their time after returning home trying to regain functions they have lost. The time they have left after all that is spent with friends and family and trying to enjoy life. For those with lower EDSS scores and less mobility issues, they too tend to get back to working out and trying to regain any functions they have lost, but mostly they just want to resume their regular lives. I think anyone with MS or any autoimmune disease realizes that life can change in an instant and that you don’t want to take any time for granted, so since you are basically given a new chance at life free of the disease you have, they jump on the opportunity and spend more time with friends and family. Some jump into traveling and travel the world, others head back to the workforce. So really there isn’t much time to spend on facebook or various groups.
So the fact that people stop posting on the groups doesn’t mean the treatment failed for them, it just means they have moved on with their lives. Most veterans are still members of the groups of the location they got treated at they just never look at the groups and never post. And then of course you do have the people who treatment failed for, most of those people will not post on groups and most leave groups just because they do not want to see success stories when the treatment failed for them. And then the majority of people treated in various locations around the world are not even members of facebook groups for the location they are treated at, or if they are, they only joined to get information on how to apply at the start and have never posted online. I have noticed that is a really common trend for those from Norway in particular. I also have chatted with quite a few people who have undergone the procedure after me in Russia or who are planning to undergo treatment in the future who are members of the Russia group and have never posted at all on there, they don’t blog or have a facebook page. Many people praise certain members of groups for spreading the word about HSCT and fully credit those people for everyone getting treatment, but quite frankly many people from Norway and other countries have not even heard of these people, watched their stories, or anything else; they have found out about HSCT from either their doctors or from other patients who have had the procedure done.
Would it be great if more people blogged about their journeys with HSCT and continued after their treatment so others could follow their stories? Yes it would, but it doesn’t appear to be a common trend. I know prior to going to Russia myself I looked at numerous blogs from people treated in Russia and even from those treated in Mexico and most were not that informative, they blogged sporadically throughout treatment and then afterwards maybe every few months if that, most stopped blogging right after treatment or within a few months afterwards. And the newest trend is for people to solely document their journey on facebook pages. Or many people have both a blog and facebook page and then randomly partway through treatment stop updating their blog and solely post on facebook. And even then most stop posting after treatment or the updates are far and few between. So really there are not that many actual blogs out there that really cover the full scope of treatment and the recovery.
So what it comes down to is that people want to focus on real life as opposed to facebook and the internet. And really in today’s society that is probably a good thing. It’s great that people are out enjoying life and nature and real people. So no big secrets are being kept by anyone, they are just out embracing their new lives. I myself am only posting every week for the first year because several people asked me too and then after that will probably switch to posting monthly or every couple months. My recovery hasn’t been super exciting, but it does allow people to see how things can fluctuate week to week during recovery.