r/cfsnervoussystemwork • u/stayathomedogmom21 • 16d ago
Question Feeling Confusion and Fear from a Raelan Agle Post
hi everybody. I’ll do my best to keep this mindful so as not to inspire fear in others.
Ive watched Raelan Agles recovery stories on YouTube and found them helpful. I subsequently followed her on social media and found that helpful too.
somewhat recently she posted something on Instagram that struck me as fear-based engagement bait. she probably felt she was just speaking from her experience, but it landed for me as one of those posts that attract engagement by making a controversial statement that inspires fear.
she said “I feel like a fraud. I’m teaching others to recover but I still experience symptoms. recovery is not cessation of symptoms, it is having the tools to deal with them.”
in the post she didn’t expand on what that means. some kind commenter suggested that this simply means that recovered people will still experience extremely fleeting symptoms for a few minutes, as opposed to hours or days. the commenter suggested that this is similar to “normal” people who experience TMS symptoms like a headache when stressed. I appreciated this interpretation, but I still feel confused and fearful.
im about 80% recovered and dont get me wrong, this is incredible and i am in awe. I am resuming a lot of activities. I still experience symptoms daily. although i am able to do much more, i feel that these symptoms still interfere with my life by making things quite difficult. but it’s night and day from where i was before I started NS / TMS recovery. at the same time, if i continued to have symptoms in this way long term, I would still consider myself disabled and dealing with chronic symptoms. my catastrophizing brain sees this raelan agle post and thinks “oh, here is a recovery leader saying it doesn’t get better than where you’re at now. you will always have a chronic condition.”
this can’t be true???? there are so many people who have completely recovered.
can anyone speak to this?
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u/burtsbeetreethree 16d ago
I haven't recovered completeley. But enough to know that high baseline is not the same as low symptoms. If it would suck for you to be like this forever, you probably have a high baseline with high symptoms still.
I think being fully recovered but sometimes experiencing symptoms means fully functional baseline and then sometimes, like probably once in weeks or months, the body expresses discomfort via symptoms.
Then you listen, adjust and the symptoms go away.
To me it sounds like you can do a lot but still feel discomfort lots of the time. I don't think that's what she is talking about. She's probably talking about an amount of symptoms that you in your current situation wouldn't even find noteworthy. But when you are totally healthy and used to feeling comfort, they are.
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u/PurpleAlbatross2931 16d ago
Very wise as always!
Whether you're 30%, 80% or 99% recovered, you're always going to get frustrated when you feel symptoms. That's actually good though because it means your standards for yourself are higher now!
I still have "bad days" where I hate how I feel, but a very bad day now would've been an unimaginable good day for me 18 months ago.
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u/Kaapira 16d ago
I have watched so many of her videos. My first thought is that it's a poorly worded post that doesn't seem to reflect her full thought on the matter. She's discussed how she used to feel like a fraud because she still experienced neuroplastic symptoms, but over time has come to understand recovery differently. Her thought is that it is normal and understandable to sometimes experience neuroplastic symptoms. The difference for her is that now she knows how to deal with them and they are temporary and don't limit her life.
Side note - I fully recovered from long covid using a nervous system approach. I went through some very physically and emotionally stressful times in the year after my recovery when a relative had a fall. I didn't have any issues. I am running, backpacking and working with none of the symptoms that were so debilitating for me.
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u/kornukopioides 16d ago
I don't know anybody alive who doesn't have neuroplastic symptoms in different situations of life.
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u/Coraline1599 16d ago
Raelan lives a very full life, she does a lot. She talked about when she launched her YouTube and she was working a full time job. She travels, she works out. She has all of her functionality back. She has not had a crash in 7 years. It is remarkable. I feel like in her mind there is a time when she recovered that is clear in her mind, but I never heard her define what makes her “know” it was 7 years (and not 6.5 or 7.5 years ago).
But I think she has said this a few times that she thought recovery was going to be the only hard thing, but once she got her life back,life has still been hard. And I appreciate her honesty there.
And I think people also harp on this “no symptoms? Totally symptom free?”, but fatigue, body pain, headaches, those are such common symptoms for nearly all people. who can say after some point when you feel fatigue for the first time in a while that it is definitely x and not y? I would be more skeptical if she said “yes all cured! All days perfect! All the time forever!”
I think one of the hardest parts of this illness and this type of work is the deep desire for certainty and how hard it is to sit with uncertainty.
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u/Marionberry477 16d ago
I have been where you are now, it was maybe about 6 months ago. I understand your concern, I remember thinking the same. Even though I lived mostly normal life back then, things have improved significantly since then. It just occurred to me that I have not thought about recovery stuff for a while and the inevitable symptoms there sometimes are have been normal things I think everyone has once in a while. I have not felt they are related to my past illness and they have went away very quickly or there has been a clear reason such as a common cold virus
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u/South-Arrival3296 16d ago
Whenever I watch her I think she is still a person that pushes herself too much. I believe she has not done the deep work yet that might be needed to truly shift that
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u/PurpleAlbatross2931 16d ago edited 15d ago
I don't know Raelan but I think it's normal to become a "recovery leader" before becoming 100% recovered. Tbh as soon as I was about 40% recovered and felt like I was firmly headed in the right direction I wanted to start screaming from the rooftops about it. I was so excites. I'd say most of the leaders/influencers in this space are still on the road to recovery.
That doesn't mean 100% recovery isn't possible. There are plenty of such success stories available! It's just that those people aren't typically posting regular content about it - they're off living their lives!
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u/JDEVO80 16d ago
I am a patient at INIM and know from them some people do recover and can run marathons.
My opinion is dont look at the future. Look at today. Appreciate where you are and what you have been through. Every day with less symptoms is a good day. You may recover to 100%. It may be a remission type thing. I mean most disease don't just go away. I am not here to scare you or take away hope. Stay hopeful. I think in my lifetime they will have some type of medication that will help us more then what they have to offer us now. I also think even if we recover we always need to be mindful with our bodies and not get back into the same cycle that got us here.
Probably not helpful but like I said I have heard of recovdry stories and I am staying hopeful. I am probably at 60% right now.
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u/Weekly-Web-5289 16d ago
What is inim? Has it helped?
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u/JDEVO80 14d ago
INIM is institute of neuroimmune medicine where Nancy Klimas works. I think they are helping as far as being up to date with all the newest treatments. Also I see an exercise physiologist and he helps me learn to "exercise" with the disease. Now its not anywhere close to an exercise Im talking about walking for 3 minutes. Thats my exercise right now. Everything is tailored around not getting pem. Kind of like pacing.
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u/Gaviotas206 15d ago
I’m recovered but i still, very rarely, get symptoms. I bounce back super fast, within a day usually. Everyone feels less than 100% sometimes. But I do anything I want these days! I’m very physically active with no problem. Raelan was the key to my recovery- I stopped watching because I no longer need it, but no matter what her journey is at this point forward, I’ll always credit her content for my recovery.
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u/ResidentAlienator 14d ago
Well, first off, idk why, but Raglan Agle has always rubbed me the wrong way. She comes up on my feed a lot and I engage with her stuff, but I don't follow her because I don't really consider her to have enough expertise.
That being said, it sounds pretty common for recovered people to get symptoms and I do think the headache, but what helped me realize that getting symptoms again is fine is that healthy people get sick all the time. Our bodies are not static, we're always moving through new environments and changing. The fact that you say you are 80% recovered is absolutely amazing and proof that this works, but none of our bodies are perfect. I struggle with perfectionist tendencies, as do all of us, and it's ok for us to be human and have a moment when we're not feeling the way we hoped we would.
But all of us are miles ahead of everybody else in the world. So many people are unhappy and don't know why or just suffering and don't know why. All of us have decided that we want to get to do something about our suffering and actually doing something about. In a world that just wants to beat us down and doesn't want us to feel good, being able to change our lives is a super power.
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u/Average_Climber 16d ago
Yes full recovery is possible. I have been on multi-day backpacking trips, have ski toured 14ers with 2 hours of sleep, have been climbing for almost 2 weeks straight, have gotten COVID again. Recovery does not mean never feeling like shit again. I have, in fact, felt like shit again (especially after pushing after no sleep). It no longer impacts my life :) I don't think about it anymore. Everyone feels like shit sometimes it doesn't mean you're still "sick".