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An article I find interesting about chronic illness online communities

Discussion in 'General Discussion Subforum' started by Ludmilla, Oct 14, 2022.

  1. Ludmilla

    Ludmilla Peer Supporter

  2. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Holy Moly, @Ludmilla! This is more than just interesting! I knew that young people were in a mental health crisis, but this is mind-blowing. And completely horrifying.

    Of course we here know all about this aspect that we see in many TMSers:
    "... amounts to an endless search for a diagnosis—a campaign to be taken seriously, to be tended to, to be granted care and attention... " but it's far worse than that with these young people.

    I was quite heartened to see a quote from a therapist who is practicing Pain Reprocessing Therapy - though in a setting with 200 people on the wait list, yeeikes.

    Common sense, indeed. Good find, @Ludmilla, thank you for posting this!

  3. Mala

    Mala Well known member

    Very disturbing trend especially when so many young people are virtually living out
    their real lives on social media.

    This question from the article really got me.

    “Someone asked me recently, ‘Who are you outside of being sick?’ and my jaw dropped,” Jacobson said. “I had absolutely no idea how to answer that question.”
    LoveAfterAll and JanAtheCPA like this.
  4. Ludmilla

    Ludmilla Peer Supporter

    Yes, I guess horrifying is the adequate word. I also knew a little about young people mental health crisis but I haven't heard about this "spoonie" world. Did a kind of deep dive into it and a lot (not all) of these people seem to be suffering from an extreme form of TMS. There's a subreddit for them and it's painful to read.

    It's difficult because it's definitely true that many medical practitioners tend to brush off these kinds of health issues, especially in women (I have PCOS and I had so-called "fibromyalgia" before finding TMS, so I saw it happen first-hand). And people needing to connect with others and expressing their difficulties is legit. But at some point, if it becomes all that you're able to talk and think about, it's definitely toxic - even when it's not TMS.

    Exactly. This identity thing that we see everywhere on the internet and about absolutely everything is driving people crazy. I saw images of "spoonies" getting tattooes of spoons, shops selling t-shirts reading things like "fibro warriors", etc.
  5. LittleWildflower

    LittleWildflower Newcomer

    Oh YES! I have definitely been exposed and effected by this. And even allowed myself to buy into and wasted so much money trying to ‘fix’ myself on supplements, diets, gadgets, workshops, and it is EVERYWHERE online. My instagram feed harassed me with ADHD, spoonies, chiropractors, keto, skincare, hair loss, hormone balancing, and endometriosis for months and they are so convincing. At first I was absolutely convinced I had all those problems and needed their help. But when nothing improved and I was spending more and more time and money only to be told I wasn’t ‘doing it right’ or needed to try harder I finally saw it as another snake oil. Yes, I am extremely vulnerable, lonely and isolated right now too so I really craved the attention and connection I got interacting with those people. I liked thinking I was part of something that was going to make me glorious and perfect and prove all those people wrong for hurting me. It was so easy to be exploited and get sucked into their promises. It took considerable energy to start blocking and ignoring those accounts. I’m tempted to detox from the internet and media entirely for a few months just to give my brain a chance to consider new possibilities. Covid and all the vaccine stuff was especially upsetting and coincided with a lot of my symptoms starting soon. I didn’t even agree, but I still felt it’s weight on my mind every time I had a vaccine or palpitation. When I got covid, even though I was absolutely fine, I was still terrified the entire time because of what I’d exposed myself to. I think my brain just exploded from all the conflicting information, the victimhood, the constant crisis and hopelessness that I’ve been intensely exposed to. And that’s my fault. Entirely my fault. Wish I’d called it sooner and not allowed myself to get sucked in but you just get so desperate, so lonely. It felt good for someone to actually care.

    To be honest, I was extremely wary about joining here even, for the reasons above. My little brain can’t take no more! I didn’t want to find myself in another pity party! But so far so good….

    but yes, social media is extremely influential and beyond toxic. I have 2 daughters and in recent weeks ones asked if she has lactose intolerance and the other wonders if she’s has ADHD… both after seeing it discussed repeatedly on YouTube! I can’t just dismiss them because I obviously don’t want them feeling rejected and ignored like I did. But it is SO hard and a massive problem in schools.
  6. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    @LittleWildflower, welcome to our forum, and I hope you will be glad you found us.

    This site is actually my only social media anymore, not that I was very active on anything else - probably due to my age. My TMS crisis was taking place twelve years ago, and the dysfunctional social media scene that we now see around health issues was still in its infancy. My profile story tells how I found out about Dr. Sarno and TMS by reading posts on a migraine forum that I never joined - instead I joined this one in 2011, and never looked back.

    I have two book recommendations for you if you're interested in changing your focus from physical symptoms to the mindbody connection. I know that these are both available at US public libraries, but of course they can also be purchased online in the usual places, in paper or e-book format.

    The tmswiki.org site and this forum were founded in honor of John Sarno MD, who developed the theory that he labeled TMS (Tension Myositis Syndrome). I think I heard that near the end of his career he said that TMS might as well stand for The Mindbody Syndrome, because his initial theory was about oxygen deprivation to muscles as a result of emotional stress, but he definitely later acknowledged that the TMS brain mechanism can result in any number of chronic and distressing physical and mental symptoms. Our main site, tmswiki.org is a source of basic information about Dr. Sarno and his theories, but I like to recommend that people who are new to this work read his last book, The Divided Mind (2009) because he goes over his theories in four efficient chapters, and then turns the book over to six other mindbody practitioners (five MDs and one therapist).

    By the way, there is a well-known and hugely influential mindbody practitioner (not an MD) in the UK named Georgie Oldfield, who collaborated extensively with Dr. Sarno before his retirement - her website talks about Dr. Sarno here: John E Sarno MD - Georgie Oldfield

    The other author who I think might speak strongly to you is Kristin Neff PhD, the "queen" of self-compassion. Her website is here, with all of her various resources: Self-Compassion - Kristen Neff. To me, it sounds like you have an urgent need to extend compassion towards yourself. People often try to insist here that one must have 100% belief in the TMS theory in order to do this work, but I actually believe that it's far more important to be able to love yourself enough to know that you deserve to recover. Learning self-compassion is the path to achieve this.

    There are a LOT of totally free resources available for doing the emotional work that is needed in order to recover from TMS (also called PPD: Psycho-Physiological Disorders), and we even have two free programs: the "starter" program for most people is the Structured Educational Program (SEP) on the main tmswiki.org site.

    Feel free to check out my profile, which lists a number of my favorite resources (it's kind of long by now!) including some of my favorite threads on the forum - at least those are easy to link to.

    All the best to you,


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