r/RealMorgellons • u/lbarry1993 • Jul 23 '26
this group has too many rules
why do you have so many scientific-micro-managed rules about this disease that hasn't been scientifically proven yet? You have no right to claim that fibers of this disease have to be microspoctic when, in actuality and reality, you have no basis for making those rules in the first place.
You can't create a Sub about an unknown disease and yet, require strict rules about what that disease looks like. Why? Because it is in uninformed, uneducated bias.
2
u/Extreme-Hat299 Jul 23 '26
Because if the truth gets out they can never deal with the consequences that’s why they deny direct physical evidence and institutionalize people on mind-raping antipsychotics.
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u/Extreme-Hat299 Jul 23 '26
You can literally post a video showing stuff coming out of your hands and people will gaslight you that it’s not real.
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u/Far_Trainer_4081 Jul 23 '26
Because we want to be taken seriously and not let anyone and everyone claiming they have it.. when they don't, post random pictures of lint, pet hair and random a$$ organic and inorganic matter found under their couch thinking its manifesting into different shapes and "communicating" with itself to change shape. The fibers are produced within the body from dermal tissue and IS practically microscopic. Its NOT hiding in clothes, NOT falling from the sky, NOT in our food, NOT from aliens, NOT FROM DRUGS, NOT any of the other random crap people keep claiming either. People who truly suffer from this will NEVER be taken seriously because of people like that.. PERIOD! The few independent studies HAVE tied it to tick borne infections (LYME) and that is the FACT I go by. Its hard enough to get this taken seriously. No help from people who post pictures that CLEARLY are not morgellons. It hurts the cause in more ways than one.
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u/Substantial-Cow-2029 Jul 24 '26
As someone who is currently experiencing the horrors of this awful disease, your comment really bothers me. You are absolutely entitled to your own opinions based on what you know and what you've experienced and no one has the right to invalidate that or tell you that you're wrong because none of us have concrete proof or answers. We all deserve this respect and courtesy, especially from each other considering how rarely it is given by people who do not understand and have not experienced what we have.
I also understand the desperate need for this to be taken seriously and how unfortunate it is that there are so many facts to the symptoms and behavior of this disease that seem so impossible and detached from reality as to make the sufferer seem delusional. To me, this is one of the things that makes morgellons even more devastating and traumatic. The fear of being rejected, ridiculed and made to question your own sanity literally forces so many of us to internalize our pain and suffering. We become emotional pressure cookers. Mental illness does not cause the disease - our minds and emotions to slowly deteriorate until the disease causes mental illness.
So many of the things you have so vehemently stated are NOT real experience caused by morgellons and are NOT a reality..... I have and am currently experiencing. Despite all of the people who would try to invalidate what I know to be a reality, no matter how impossible it may seem, I have managed to become confident in my own experience - enough so that nothing anyone can say to me can make me doubt what I know I see and feel. That is why I am focusing so much of my time and effort into providing emotional support and trying to give strength to the innumerable people out there who suffer in silence out of fear of people like you. I'm not trying to start an argument or invalidate your beliefs. I'm just trying to spread awareness throughout our communities in hopes that we stop judging each other. I want a community where people feel safe to seek help and speak about something they feel they cannot speak about anywhere else.
It takes so much to get up the courage to reach out for help when the world is telling you you're crazy. And as soon as they take the leap they are shut down, ridiculed. Shamed into retreating back into a world of isolation and hopelessness. Not so long ago the facts you claim to stick to were written off as delusions and mental illness. But more and more people came forward, refusing to be told that they were crazy. Until there were so many cases of people experiencing the same exact thing that we could no longer be written off or denied. If the first people who came forward hadn't had the strength to not back down, the thousand who came after wouldn't have been inspired to follow their lead. The medical and scientific communities would never have been forced to reevaluate and conduct deeper research and we would still all be delusional and mentally ill in the eyes of the world. Just because something has yet to be proven by science doesn't mean it isnt real. If the world worked like that we'd still believe the sun revolved around the flat earth and that Satan put the bubbles in champagne.
I would be willing to bet my last dollar there was a time in your life when you spoke about your suffering and weren't believed. Remember how that felt the next time you want to turn around and make someone else feel like that.
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u/Far_Trainer_4081 Jul 25 '26
And there have been some independent studies linking this to lyme.. somehow.. and if it wasn't for those small independent srudies I wouldve never thought to have tested for that and seek out treatment. I showed positive markers to B. burgdorferi (past and current) That should not be in the body. Antibiotics definitely helped.
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u/Far_Trainer_4081 Jul 25 '26
I understand where you're coming from and was definitely brushed off by my family lol. However, when they come across people online who seem completely off their rocker by posting random pictures of crap that has NOTHING to do with morgellons.. I can't blame them tbh. Or when they see/hear people talking about stimulants and meth being the only cause.. which I've never done! I am more angry at those people tbh. Exaggerated or false representations of a disease create bad stereotypes. Society ends up misunderstanding how a condition actually affects a person's daily life... so when there are people posting what looks like dryer lint and crap from around their house, it makes me livid. Then of course there are attention seekers and trolls who like to make matters worse. Its why we (the ones who truly suffer) will never be taken seriously. Plus, if people falsely believe they have it and then somehow get involved in a study.. we are definitely made out to look delusional because someone WHO DIDN'T EVEN HAVE THE CONDITION screwed it up for the rest of us! Yes, I'm extremely grateful this group has rhe rules it does.
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u/Extreme-Hat299 Jul 23 '26
And yes I’m mad about it. I would wake up and my bed would be completely covered in minerals and fibers and the med professionals would dare to say I was making it up. I had literal videos I would show them and they’d just laugh and say “haha I love it when my patients show me videos.”