Thank you so much Raelan for all the hard work you're doing, for spreading the message, and for helping a lot of us 💖🙌 I've been gas lighted by family, doctors, co-workers, friends and so on many times during my 19 year long journey with ME. I has really taken a toll on my psyche, to not have been seen and understood so many times. But, I have a great doctor now, and people around me seem to finally understand me which is great. I've decided that my truth is the only thing that matters to me, others just project their world image and insecurities, and I will not take them as my truth. It's so freaking important to set boundaries with those types of people which I've had to learn the hard way... thank you again, I appreciate you so much, you're a light shining the way! 😚
Aw Bex, thank you so much for sharing this! Your words have given me goosebumps. I'm so sorry for 19 freaking years of struggle. That is beyond unfair. Your words inspire me though and your attitude reinforces the attitude I also strive to have. You are so right - we will never escape the judgement of others, and our truth is the only thing that truly matters. Thank you for taking a moment to share a piece of your journey here and also send some beautiful support my way. You are a light also!
I HATE when I am looking for helpful resources for recovery and healing and there are people in the comments of videos or posts that say you can’t recover and that it’s impossible to improve significantly because they haven’t. It’s toxic and honestly adds more sadness and anxiety to a situation that is already terrible. Yes, I want people to be able to express their experience but they should not consider themselves the experts of all people with CFS just because of what’s happening with their body. Each body is different and everyone responds differently to certain interventions. All This negativity is why I left fb groups and stopped looking at Instagram posts/hashtags. The people in my life all know someone who has recovered from CFS (including my doctor) and I will cling to that hope instead of to someone who thinks “acceptance” and doing nothing to try to improve is the way to go.
I agree with all that you said but I also think that a certain degree of acceptance has been beneficial to me. I tend to try something then if it doesn't work I go through a period of just accepting it until I have the energy to try again. Actually there's a quote which I find really sums up ME “Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow.” Mary Anne Radmacher I hope you get there soon! X x
Also, as a “mild” CFS sufferer who can still work, even exercise sometimes and socialize, it’s deeply deeply hellish as you constantly feel like shit, especially when symptoms flare. Whether if your in your bed or surviving the best as you can trying to work it’s no way to live and we all have more in common in this than we have differences
I agree 1000%. There is no version of this that is not some form of hell. When every single day of your life feels like a struggle to get through, even if you can go to work - life is still so hard. We all definitely have a lot in common and when it comes to suffering I see no useful purpose in competing!
Raelan, such an important message. I would say in my 12 year journey with CFS, my gaslighting experiences have been minimal because I was too afraid to talk about it out of fear of being gaslighted or misunderstood. I had become the queen of excuses for why I couldn't do things or participate in normal everyday activities. Your courage in sharing your story/others stories has given me the courage to say my truth out loud, advocate for myself, and find a community of people who are recovered or on the journey to recovery. The CFS community has always had more than enough naysayers and its about time we have some cheerleaders. Thank you for paving the way and for all the work you have done to support, educate, inspire, uplift, and connect this community!
Hi Linda, thanks so much for sharing this here. I can definitely relate to what you've just shared. For years I didn't dare speak a word of ME/CFS to almost anyone. I was sure others would judge and think less of me. Telling our truth - it's freeing though, isn't it? And thank you for the support and kindness you've just sent my way, I definitely appreciate it. Thank you as well for being brave enough to reach out and connect and share a bit of your story as well
Yes, I was definitely gaslighted by various GPs. My ME/CFS & Fibro was a gradual onset over many years. It was a frog in boiling water situation, and I wasn't diagnosed until I was terribly ill. As a result, gaslighting myself became a habit too. Even when I struggled to shower or sit upright in bed for 40 minutes a day, I still questioned whether I was truly ill--if I had somehow made it all up in my head. It took me a good six months to break that conditioning. I'm sorry you're dealing with hurtful comments, Raelan. I think everyone deserves to be rewarded for their time and energy too! Keep up the great work.
I'm so sorry Cheggs, to hear what you've been gong through. What a great point you bring up though - we gaslight ourselves, don't we. This is a common occurrence, I suspect, for many of us. ME/CFS doesn't really land on the "official" list of things that qualify for "legitimate" suffering, does it. We have so many laters of conditioning to examine, and I appreciate you sharing your experience with this. Thank you! Sending hugs :)
I am guilty of this also. Even now I question myself! If there was a test we would not be in any doubt and I think having a test is going to be a major step in ME because the stress of not knowing for certain really makes those early weeks / months torture. Also we tend to keep going until we absolutely can't any longer and a test might stop future ME sufferers in their tracks x
@@jennamartin-payne1653 Not when they rig their testing procedures for things such as LYMe .. so they can say to 80% of people who do have it , dont ... Back to work you should be shoved because we say your fine and making it up ..... Lovely nice good people helping other humans hey >>>>>> Thus WRONGING people who really are genuinely really ill .. People need to understand this goes on ... Shouldnt but it does ...and on that point .... and more ...... ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-f8DU1Z6R-ms.html (CORRUPTION may have heard of it ) .... The way things are going i have no faith in the medical community left ...Check out the rest of the playlist to comprehend the point deeper ..peoples health should be a thing that matters to all after all we are supposedly all people /supposedly compassionate caring (Pffft yeah right ) Human beings .... Most are ignorant and then help wrong so many who are already suffering....I have had nothing but denial and push and shove ..ignorance to anything can show etc ..from microscopy of things coming out pores of body to fibromyalgia and heavy chronic fatigue etc ... and LYME/Morgellons ...and expected top pretend its all in my head ..No thx society can go ....BLLEEEEEEEEEP instead hey ..... if they ignorant of then same goes
Congratulations on 1k Subscribers :) I am so grateful for your content it gives me so much hope. This is a video important video and it is clear that the gaslighting that comes from people who have CFS are just having a really hard time and maybe the things that you suggest don't work for them. I have tried many things that you and other people have suggested in the CFS community and they don't work for me. This is what makes this illness so difficult to deal with. However, the wonderful thing you do on your channel is that you're getting multiple other people on it to share their stories. This is what gives us hope because the reality is we aren't just going to get out of it and you need to keep trying to new things. It might be good to make a video about how your attitude and not giving up is going to be the thing that helps you recover. The people who don't have CFS and tell you, you don't have it are just arrogant and you can do without those people. :)
Hey Pamela! Thanks so much for sharing all of this. I totally agree, gaslighting most likely usually comes from a place of frustration and pain and none of us should take it personally. (Although sometimes that is easier said than done!) And It IS so frustrating. Others are confidently sharing what healed them and then we do the same thing to the letter and get nowhere. It's demoralizing. Such a cruel illness. I'm glad you're enjoying the stories of others (my fav too!) and thank you for the EXCELLENT video topic suggestion. I just added it to my list! Sending hugs to you :) :)
YAAAS GIRL! Thanks for so much love! This subject of abuse in cfs community is not talked about enough. You become the spokesperson of improving this situation. I have been the victim of gazlighting and even neglect in my own personal life so many times that I developed ptsd from it. It took me years only to validate myslef of my cfs situation and make people around me accept this truth, whether they want it or not. For about one year in my worst bedbound/unable to move time, I was neglected by my caretakers and not fed enough. The argument was that I should get up and do it myself. It became so intense that I almost became crazy, screaming to them to bring me food. They were gazlighting me that I was not as sick as I said. This is what denial can do at its worst. It's the first time I speak about this openly and to this day, I still have severe ptsd about this.
Yes!! I have experienced this repeatedly. It hurts the most when it's family member - this is devastating. It's not only invalidating, but can also mean not getting to any support - if they invalidate your illness it makes them feel better about not supporting you. It makes a life-changing disease even harder to bear. Thanks for your channel Raelan, it provides invaluable support.
Yes! And side note, your videos have helped me immensely! I tell people how your comment 'i know it sounds crazy but I wanted everyone to stop what they were doing and help me solve this mystery and then we can all get on with our lives' because that's exactly how I feel about what's been happening to me. It's actually been 5 years that I've been suffering from chronic sinus infections and the doctors have not been able to figure out the cause and I have been made to feel by some that it's not real or I'm making it up or I'm doing something to make myself sick. Thanks to your videos though I've finally been able to not sorry about people who discredit me and just focus on solving my mystery and getting healthy. I tell people that even though I don't have me CFS that I have found a supportive group of women who's struggle and journey to health have many similarities. I have found a glimmer of hope that my mystery has been solved. It's a rare occurrence where a tooth infection where tooth pain is not present and the infection spreads to the sinuses. It's called Maxillary Sinusitis of Endodontic Origin (MESO) and people can suffer for years before it's discovered, like me, and it's so rare and the fact that it doesn't really present itself in CT scans and ENT doctors don't communicate with dentists so I finally have hope that my pain and suffering will come to an end and I am trying not to worry what people think because I know the hell that I have endured these 5 past years and I don't have time for people's gaslighting because I have fought just to survive and I have had to accept that nobody is going to know how hard this has been. Your videos have made me feel less alone and have helped me get thru certain hard days. While our chronic illnesses are different they are both debilitating and once I am stronger and healthier and recovered I would love to possibly share my story with you and your followers because I feel the same way, my condition is so rare but there has to be others out there who have suffered and there are so many parallel s and common experiences that my journey shares with your and your followers. Thank you so much for making these videos because they help me keep hope and that's crucial for me right now. Namaste
Hey Erin! I KNEW I couldn't be alone in feeling that the world should stop spinning (so to speak) while everyone got busy solving the highjacking of my life. Thank you so much for sharing that. Because it is dramatic, and traumatic, isn't it? And there is so much gaslighting, isn't there. As someone so aptly pointed out in a comment here, we actually do it to ourselves a lot. Your story sounds like it echoes my own almost exactly. You are so right, the exact diagnosis and exact symptoms do not affect our overall experience with this. We are all the same, and I feel a sisterhood (/brotherhood) with you and the rest of us for sure. And I would LOVE to help you share your story, Erin. You just tell me when and we have a date for that :) Sending love and hugs to you! Namaste
Thank you so much, Raelan, for addressing this very important issue. And YES - I have certainly been subject to gaslighting - medical gaslighting of the worst kind - from several Danish arrogant, patronizing asshole-doctors who claimed ME 1) doesn't exist and my symptoms were psychosomatic aka a "functional disorder" which is another word for hypochondria. 2) ME is not a real organic disease - again the psychiatric explanation. 3) Belittle symptoms by claiming it can't be as bad as I had described when I "only" had elevated IgA and some other - in their minds - "minor" lab findings. It's devastating and so hurtful, just adding more pain and hopelessness to an already horrible situation. One feels so alone and let down by the very people who should help us. Thank you so much again, Raelan, for creating this awesome platform. You give so much help, hope, advice, encouragement, and love to all of us - and that's why I am so grateful to you. I found your channel in one of my darkest moments, when I was contemplating about checking out from it all - since I probably never would get my health back ever again. But suddenly there you were with plenty of stories about recovery - that it actually is feasible - and you literaly gave me hope and light again. I've bought your book - and I love it. So bye for now - sending you plenty of love and gratitude back.❤💕
Hi Anna Maria. I am so sorry to hear about all this BS that you have faced. It is inexcusable. And heartbreaking. But your words, and your story, have given me goosebumps. As so many other stories have. So many of us have been this low, this helpless, and this defeated. I am so sorry that you have had to face this kind of pain. Thank you for sharing a bit of your journey, as I'm sure I'm not the only one who can relate. It took me a long time to realize this, but when we come together we truly can be stronger. We can learn from each other and find our path out. I'm elated to hear that my story has fueled hope in your own recovery long journey. Thanks for taking a chance on my book, I hope you enjoy it. I am sending love and gratitude back to you also
Thank you so much for what you are doing here Raelan! I only discovered your videos two days ago and have devoured them, one after another. My story is similar to yours in SO MANY ways and I am still trying to wrap my mind around the fact that this (ME/CFS) really is a thing since I have never heard of it before and have been dismissed by so many doctors, often eventually being told that either they don’t know what is wrong with me or that it is just depression. I have spent many, many thousands of dollars over the past 7 years on tests, supplements, doctors visits, etc with little to no improvement. Had to quit my job, no insurance, no support, accumulating debt.....not good. I LOVE your videos and your approach and now have renewed hope that I can actually recover and regain my life which I so desperately want and need to do. Btw - this is the first time that I have ever felt compelled to subscribe and then comment but I just had to because you and the others in your videos are awesome!
Hi Mary! First off - I am so sorry to hear about all that you've been going through. I got goosebumps reading your comment here because I can relate and know what a harsh journey this can be. But I'm so glad that you're enjoying these videos and have renewed hope for recovery. I think that finding ways to hold on to hope and not give up is the MOST important key to recovery. Keep going! You've got this!! I am cheering you on!!! 💗
Yes. Endless gaslighting. Grateful to you Raelan and every one of your guests. More than I can express. What you do and more importantly HOW you are doing it with so much positivity is 100% awesome. Finding your channel gave me the mindset of positivity and hope and to fight back against a dangerous form of medical gaslighting! Shortly after self-diagnosis, I read Kaiser's patient advisory online: I paraphrase "Serious debilitating disease. No FDA-approved treatment or cure". Climbing back out of my pit of despair I re-read and picked out "FDA-approved". I got so angry at the harm of this gaslighting. I scheduled a video appt with my Doc to explain the disease to her and declared, quite firmly "The FDA is not the boss of my health! "F" the FDA! There is a LOT that can be done! I WILL GET WELL!". (Yes, I used the "F" word to get my point across! She vowed to learn along with me, while trying to get me an outside referral, so I'm sticking with her for now). What Kaiser was really saying in those statements is they didn't want to treat us and hoped we would just give up and fade into the background. They are doing the same with Long Covid. It's like "Yea, sure, we acknowledge you have a serious disease, but until the pharmaceutical companies come up with a drug that generates Billions in revenue, there is simply nothing to be done to get well. Pace yourself. And know that our mental health counselors are standing by to help you!"
So important! I used to defend myself until I learnt that this is what the psychological abuser wants. They want to "milk" your reactions. Now I just say "I'm fine with you thinking/saying that about me" :D Drives them nuts XD
Recently, I have started thinking whether it is possible that people susceptible to CFS also suffer from poorly developed boundaries and self which makes it more likely for them to push past the endurance limit and allow non encouraging inputs from others. Maladaptive coping strategies seem to be something everyone had to change before they got better. Wonder what others think?
Thank you so much for posting this, Raelan! (And don't worry, I am not saying that as a precursory warm-up to some sort of nasty comment! I am so sorry you had that!) Gosh, it's awful hearing the kinds of things you have had said to you Raelan, and to yourselves Liz and Katy. I am so sorry you had to experience those things! Raelan, I can see you always strive to respond so graciously and not reactively (even when it would be so hard!). I can see you always strive for empathy, even with those who might be hard to empathise with. Well done really loving your enemies and extending forgiveness. This is really beautiful to see! And very Jesus-like! Not easy for us human beings -- and especially not after going through such struggle. Thanks for all you do out of the goodness of your heart to help others! And well done expressing this and encouraging us all to reflect on our behaviour, so we can all be better people. Let's all champion each other on in their recovery journeys! 💪❤️👯
Urgh yes! I was medicated for a few years for depression and anxiety. I even had CBT because I was saying I found walking for 15 mins to get my son extremely hard and it made me very anxious that I wouldn't get back. I explained I had pain etc. I was also very deficient in vitamin D and B12. I had a doctor telling me my anxiety was causing my pain and another suggesting that I needed to take time out for myself as mums find it hard to do that. I was sleeping whenever I had a moment! It's horrible being gaslighted and with so many people doing it you do feel crazy x
Yes!! It's such a hard situation to be faced by so many "experts" that are pumping you full of false information. I'm sorry you've faced this Jenna, but thank you so much for sharing this :)
I greatly appreciate your beautiful attitude and willingness to share with us your story. I am struggling with this disease and I am finding the majority of facebook groups and support forums to be filled with people who seem to be okay with staying inside their disease... even though they go to great lengths to discuss and try out new modalities, supplements, and therapies, they seem to be okay with forever doing that. I stopped going to these groups because after taking part in these communities I'd always feel like I'd be stuck with this disease for the rest of my life. They never left me feeling hopeful or uplifted. I think the reason is because they are looking for something outside themselves... a doctor, a cure, a therapy, a prescription, ... that will heal them. But sometimes I think the secret to this disease is that the "cure" is within us. We have to seek it, and that is a lot harder, and takes a lot more work. I do not want to believe I'll have this forever. In other words, I think the ME community can greatly benefit from as many positive stories as we can find and share. For those people who want to continue to believe it's incurable, or that movement doesn't help, or that we are in charge of our own bodies and our own healing, well there's plenty of resources and groups out there for those people. So thank you for providing something better for those of us that don't want to stay stuck. I personally really appreciate it.
I'm with yah, Tiffany! And thanks for your support here, I very much appreciate it. I also need to surround myself with positivity and focus on complete recovery! I'm sending you hugs for your own journey and wishing you all the best 🌷
Oh brava! Good for you in saying this and drawing a boundary. Your channel definitely challenges my beliefs about ME/CFS, which is a good thing. You're serving up a reality I hadn't ever entertained before, but I certainly don't question the veracity of you or your guests. Your videos are very stimulating, and provacative, and supportive, and often times mind-blowing. Keep 'em coming. I'm here for it.
Good for you for being so open minded and considering new things. Not an easy thing to do! And thanks for all of your awesome comments, they always make me smile 😄
Thank you so much Raelan, Katy & Liz, I have experienced this over the years and it also happens in other chronic illness communities too, I used to feel deeply wounded by the comments of people but have now come to realise that is always about them and not me hurt people, hurt people. I am not perfect by any means and try to think carefully how I react and respond to people I usually ignore unhelpful comments now, it takes far too much energy to get caught up in overthinking. It takes great courage to do what you guys are doing and I admire you all so much and I am so grateful to you for the love you show up with and the ripple effect that is having 💜🙏🏻
I just finished watching. This makes me so sad. I started welling up listening to you because I can tell this has been a big issue. I guess different things work for different people as different things seem to bring us here in the first place. The answer for one person might not be the answer for another. But I really love watching your channel because you have such a variety of people talking and you all have different stories, and none of you are pushy with them. So maybe I won't recover the same way but listening gives me ideas to try and therefore hope. I was thinking today that if anyone came past my house they would see me painting my porch and think oh she's fine. What they wouldn't see is that yesterday I didn't make it out of bed and that painting today, I have been doing that in 3 minute stints over the last week before I am covered in sweat and need to rest and I am still only on filling holes! I also know I am being silly doing it because I will pay. No-one has the superhuman ability to judge from a snippet of information they get about someone else. Please keep going; you are the only ME youtuber I have followed since I knew I had ME in 2016! I guess people resent you but really they should see recovered people as a ray of light. Off topic a bit but I would really love to hear you talk about how life was for you as a child with a parent with ME and if there is anything that us parents with ME can do to lessen the impact on our children. It's my biggest struggle and I think stressing about how it's affecting them is probably having an impact on my condition which is terribly ironic! I would love to hear your thoughts on it. You are obviously so kind and I think some people really do find that hard to deal with somehow. Maybe it's easier to believe there is a hidden agenda? Or maybe like you say they are just really sad and finding it hard to be positive about anything. Stay well and I hope you don't feel too sad about the mean ones x x
Hey Jenna! First off, thank you so much for sharing all of this. And I'm so glad that this is how things are coming across. I definitely on purpose seek out people who will not try and forcefully put their ideas on others. I think most of us appreciate that we all need to find what works for us and that no one thing will work for everyone. And you are so right about the snippets of information. And social media is even worse for this, isn't it? We see smiling photos of people and assume everything must be fine. And finally, thank you, Jenna, for asking about what it was like to be a child of someone with CFS. I always feel that I have nothing to offer parents facing ME/CFS, and somehow I forget about how I grew up living this every single day as a child. I will absolutely do a video sharing my experiencing with this and I hope that something will be helpful for others. Thank you for the support Jenna and I am sending it all back your way. You are clearly an incredible person injecting so much good into the world. Stay well also! Sending tons of hugs to you :)
Thank you Raelan, Liz and Katy. I’ve had situations with friends that have brought me to tears but there was confusion on my part what was happening. I have long Covid and there has been more in the press about symptoms etc. I’m glad this brings attention to these invisible illnesses but it have meant that you get “advice” telling you to take antidepressants or ivermectin and be done with it. I don’t have a diagnosis as I was very sick and home by myself during Covid. Antibody tests at the time were expensive and you had to submit paperwork to get it. I don’t have health insurance so after doing a fundraiser I was able to see s doctor and by that time 6 months later my sntibodies were gone. So my diagnosis in my medical records is unspecified, difficulty breathing and depressive disorder. All test are normal except I was diagnosed with COPD. Which I was told is because I used to smoke. This video was very supportive and gave me resources to have in the future ❤️
Raelan, Kate and Liz, thank you for such a thoughtful discussion. What I would love to see as a follow-up (and you may have already done this (I am still four years away from catching up:) are the gentle, kind, productive ways others handle gas-lighting if/when they have the spoons to do so. I am sometimes presented with a chance to explain to others in our community that I think recovery is possible. And depending on where they are on their journey, depending on how fearful and anxious the thought of recovery is to them, I try (as a retired psychologist and as a previously very sick human:)) to help them out of their stuck and sucky places. That means I have to be extra careful about how I present the story of my recovering - so that maybe I can soften and open them up to new ideas instead of provoking them to set up fences. I would love to know what others have tried in this regard and how it worked. Thanks again ladies for your honesty, thoughtfulness and kindness. You rcontributions mean the world to me.
OMG Raelan, I am so sorry to hear that people have verbally attacked you, I am so very grateful and thankful for all you have done and do. YOU are giving me hope 🥰
I love this video and am so grateful to you Raelan for putting out such great content and providing support to so many. You are an inspiration to me and give me hope that full recovery is possible. Thank you!
I have bi polar ( previously known as manic depression) and ME. When I had my breakdown and I was at my most vulnerable, some people with ME said I didn’t have ME. The fact is I rapid cycled moods from my bed. I was so poorly mentally. I much better now , but I still have ME and I’m still in bed. Because there’s no cure. Thank you so much for this video. ❤️ I don’t go on Facebook anymore. I find instagram a bit nicer. You’re such a beautiful person.. it shines I’m going to shine too. Lots of love x :)
My parents do this to me ALL the time !!! MY ENTIRE LIFE ! I think it’s partly why my ME became worse …. I ended up a single mum and they took over and just made me feel worthless - I moved into a woman’s shelter to get away from it … I struggle for years - I eventfully was diagnosed with ME - I thought they’d realize and want to help - but they said it’s all in my head , my dad said it was because I was fat … it’s was mental abuse for years and then when I became so ill living in a house with mold - I could hardly walk / it was so hard to look after my son- my parents bought a house with a pool, a clubhouse with art room - indoor pool etc - spoil my son and he wanted us to move back with them - and I felt I had to as it was best for him / it’s been hell for me being back and I’ve often felt suicidal and now I’m losing hope - they say I’m not sick - I’m just crazy - I have been trying so hard to recover - changed my diet take supplements - they see it all insane - I’m so fed up - I can’t afford rent where they live - I hung in there till my son made it to university so I’m going to try start over and move out now but it’s against such manipulative lives from my mum to stay and control me and my dad to tell me to get out … it’s beyond what anyone could cope with !!! I’ve sent this to them and told them this is what they do to me - I also was late diagnosed with adhd and suffer with RSD … none of diagnosed conditions mean anything to them / they tell people I google things online and think I have imaginary illness - it’s so hurtful to hear this from my parents is soul destroying at times … when I was tired with ME over Xmas they made me self isolate ( as it your sick it’s covid so you should self isolate they did it on purpose to make me feel bad for saying I didn’t feel well) I had ti sit in my bedroom listening to them enjoying Xmas and ignore me all day - the only person I spoke to on Xmas day was the suicide hit line / so had such a good relationship with my son and now he’s just influenced by them and wants the lifestyle they can provide - I’m done I’m just going to run aaay … I don’t know what to do
I haven’t shared my me/cfs diagnoses with many because of past gaslighting experiences. I hate the it’s all in your head you need to find the positives in life 😔🤦🏼♀️🤷♀️ Comments. Also, if I can’t do something, I get sly comments like, your just making excuses and using the me/cfs card. 🤦🏼♀️🤷♀️😢 Sad as I’m trying to research this and get back to a better place. Thankfully I have a wonderful GP. I gave the details of this RU-vid site to him and he was supportive that I had this resource to help and guide me. Especially as I’m newly diagnosed. I like this honest and helpful tips and support. Thank you xx
Thanks so much for this video! It makes me so sad that people can say such hurtful comments. I appreciate very much hearing all your recovery stories. I know you all went through hell and it inspires me to see you come out on the other side! I know I had a doctor at first that just thought I was depressed. I was depressed because I was so sick and couldn't do anything. He now validates my feelings as he has seen more patients with this illness. I also had someone in my life who didn't believe me. And then even though I've had a diagnosis for over 4 years ago, she was shocked when I took part in a study at an M.E/CFS clinic and when I told her they confirmed my diagnosis. So I wonder if all this time she hasn't believed me. I also struggle with sharing wins and progress or trips on social media as I wonder if people will question if I was ever sick. So I understand this feeling. Luckily I haven't had any comments yet, but wonder if I will.
I'm so sorry you've also had to face this Kathy, but I can totally relate. People don't always get it and they can say not optimal things some times. No avoiding it unfortunately I think. I love your attitude though and all the positivity you send out. We are lucky to have you!
Also too what we have to understand is that people are suffering, and there is no “set” recovery, so I believe that everyone should be open to new ideas and supportive to those who recover. And if you do recover, and someone comes at you, you have to understand that they are in a lot of fucking pain, and deep down I’m sure they are happy for you. Also, you are recovered, if you are putting your recovery story out there? So who cares? Additionally, for every group of people who hears your story and doubts it or talks shit, you are probably helping out at least one person tremendously. So that in it of itself is worth posting the recovery story
Oh my, Raelan, I would never have imagined the trolls would have gotten to you. Also, I imagined you would be making SOMETHING because I know you work very very hard for us, people you don’t even know. I’ll buy your book (I was putting it off; there’s so much to read; I already have a few books on the subject). I hope you don’t get burned out and discouraged by these miserable people. You are the most prolific source of information. And from SO MANY DIFFERENT QUARTERS. I send you love and good will. Tonja
Wow, great topic. This should apply to every area of the internet. Thank you for being brave and holding this space so that we can come together, and beat this. Individually and together.
I'm sorry to hear you've experienced this as well, Marie. But it's very nice to hear from you (from Finland!) and I'm so glad to hear that you're enjoying the videos 💕
Cfs sufferers are empaths... empaths are supersensitive to energy and feelings empaths can give away their energy to freely...leading to exhaustion and burnout empaths attract narcisists and energy vampires... who milk them untill illness and even death our society has become narcisistic empaths blossom around other empaths... empaths share energy and feelings with each other safely and compassionately... empaths are spread quite thinly through society... empaths are beautiful beings of light... empaths need empaths...
Yes. Can you teach us a bit about how to take back our power? This is vital, and I am like a little one who has just learned about this and need to find a way through. I would really like to hear from you how to do this. You are geniune and seem to really care.
Hi Raelan. 100% with you on the topic of this video, thankyou for making it. The whole problem it appears stems from the bulk of current medical thinking. They have encountered a problem that at present they cannot understand so want to explain it away with nebulous explanations rather than admit they at present can't unpick the reasons causing the issues. I greatly appreciate those who have worked hard against the status quo and search for answers. Meanwhile the people that suffer start taking chunks out of each other in frustration and desperation because they have been horrendously let down by the people that they hoped would help them. In the media you can even see its starting to go the same way with explanations for long covid. I understand the USA is spending big money on research on this problem, may it unlock some mysteries for many suffering. Last point is that doubt around these conditions only comes from people enjoying good health, never from someone who is suffering or has suffered. Maybe this pandemic will bring some answers through research, but ignoring it serves nobody.
Yes! From doctor's and other authorities, from people close to me and I see it so often in social media groups. Too the extent that I never had the courage to share much, if anything, about my story and the things that worked for me.
I didn't share with anyone that I had ME/CFS for the first 2 years I was sick. I had been gaslighted by nearly every doctor/specialist, and by my employer when I applied for sick leave (a Provincial Government position). I decided suffering alone was better than being told it was all in my head/not a real condition.
A definite Yes and the good news is the more they do it the less impact it has on you till it doesn't bring you down at all but it makes you more sure of yourself while making the gas-lighters look like the ignorant things they are. Once you fully realize they are clueless you should feel better cause you know they can't hurt you anymore.
Mine is “ oh you look so well”??? I’m never sure whether to laugh at them or tackle them to the floor🤣obviously when I’m extremely bad they don’t see me because I’m stuck at home. They have NO idea 😬
Hi! Does anyone know how to protect us by the law? This is an abuse and we need help. “You have your own hands and legs to do it” , “this is your own fault”, “you don’t want to do anything to recover “ - my husband’s words to me, when I was at my worst. He refused to provide for me so I had to do full time job and at times though I was dying. I only survived because I had my little son and I had to live for him. I didn’t have anyone to go to since my relatives were back in Ukraine. I live in the USA. I have progressed a lot on my CFS, even without quitting a job! But my question is still here. There has to be a responsibility on those who neglected us, when we needed help the most. Any comments, suggestions? I still want to recover 100%
I'm so sorry to hear that Donna. There are millions of us that believe you, although I suspect that isn't so comforting when some people closest to you are not supportive. Sending hugs 🤗
Realan i cant believe people have been so mean im speachless arnt there enough awful things going on in the world without people wasting there enery and time trying to pull you down. I personally took your advice and have gone pbwf i stiill cant do much exercise but i try to go on daily walks i do know the plant based food has definitely helped . Chin up sometimes you just have to walk away from some people.x
Hey Kay, good for you for making some changes and trying new things. And I'm so glad plant-based has helped! And thanks for the support, I really do appreciate it. One of the many great take-aways from all of this is that I am developing incredibly thick skin. People don't have the power over me like they used to! Wishing you all the best Kay with your recovery 💛
The complexity of cfs/me differs from patient to patient. Unfortunately what happens is someone can get a cfs/me diagnoses and be so sick bedbound etc but are likely suffering other complex factors such as mold, lyme or whatever and the emotional work just isn't enough to recovery or even make a dent on recovery. These types of people I believe are misunderstood. The ones who respond well to emotional work such as dnrs gupta etc have psychological somantic symptom/disorder basically emotional brain causing physical symptoms. This is why people with complex cfs/me get angry I feel saying emotional work can heal lyme mold parasites or whatever is going on. Your recovery story is a gift to those suffering with psychological cfs/me so it's important I feel to reach out to the correct audience.
When the maladaptive stress response is brought down the body takes care of mold, lyme, parasites, epstein barr virus etc. Look at DNRS and other modalities, there are many recovery stories of people who were diagnosed with all these things (mold, lyme, etc.), did lots of functional and western medicine which did not help, and then got better when they retrained their brain out of the maladaptive stress response. The way to tell if the stress response is the issue is whether a persons' symptoms go up and down depending on time of day, day to day, have flares/crashes etc. I assume that you have me/cfs and believe it is different that those that recovered with mindbody modalities. The question to ask yourself is whether you have felt a bit better when doing something enjoyable, have your attention of something like a exciting basketball game, have a visit from a kind friend and whether you notice a uptick in symptoms when things are not going so well. Just because mindbody techniques work does not mean that it is all in our heads. The symptoms are real! The problem is a real physical one, the amygdala in the limbic system in the brain is so oversensitised that the it takes only a small amount bit of mental and emotional stress (as well as physical stress) to bring on symptoms. In my experience and what I have learned, it is the worry and fear about about the illnesses itself and all the symptoms that is what really revs up the nervous system and learning to not fear and not worry about symptoms and the condition (while staying mostly with the baseline and slowly expanding the envelope) is the way out. Lastly, I have done lots of emotional work which I did find helpful, but the most important thing was quieting my mind and stop worrying about and fearing the symptoms and knowing I was ok. It has taken my 18 months and I feel 90% recovered. John El Mokadem's audios were really helpful for me, breakthroughthat.com/cfs-audio/ Check out the Lightening Process recoveries also--all those recoveries helped assure me that this really was a stress response issue. Here is one of the practitioners, ru-vid.com Following Joe Dispenza's youtube channel and hearing all the testimonials of people who recovered from so many different illnesses helped me also--they all healed from mindbody work! Getting into the parasympathetic nervous system the majority of the time allows the body to heal, detoxify, build energy and do all the things needed for health!
Hi David, labeling people as "psychological somatic cfs/me" if they dealt with their emotions or worked to heal their fight-or-flight system through neuroplasticity is actually gas-lighting. I actually had severe (the highest my ME/CFS specialist had ever seen) mold toxicity. It was essential for me to get out of the mold and get it out of my body through sauna time, etc. Getting out of my water damaged house was essential and helped my body know it was safe. So I was - but then I crashed to the minor mental stress / physical exertion / tiny mold exposure (a visitor's sweater) and I was back needing wheelchair assist. I didn't want to live in a bubble trying to avoid "the crash." It was time to help my body thrive. So I dealt with my dialed up fight-or-flight system (not negative thoughts -- I didn't by choice wake up paralyzed when it rained before I could see out my window) so I could function in society (PS. Raelan didn't use a program and dealing with emotions was one of dozens of things she did). But -- I also had to do many other things in my life to heal and do some of these things hundreds or thousands of times. And we're joining together with love to share these things. ME/CFS whether it was triggered by lyme or mold or emotional trauma or a combination is a multi-system neuroimmune & metabolic condition. The one thing vs the other thing is a false tactic. I'm so happy to see people who are open to a multi-faceted approach, that yes includes calming our nervous system and processing emotions -- who comment on this channel. Let's join arms and support one another. PS. I don't write this to defend myself. I write this to give people understanding and also hope.❤️
It's all quite mysterious and confusing, I find, David. And I empathize with your skepticism. Personally, I don't discount the healing of others however improbable their methods might seem. I did pharmaceuticals for my Lyme and EBV and this never seemed to help. And then seemingly simple therapies (although grueling and needing to be rigorously followed) that fall under lifestyle medicine saved my life. I think there's more that we don't know than we do know :)
@@RaelanAgle @Raelan Agle I'm not skeptic at all. Everything you teach is valuable information to support recovery from not only cfs/me but most illnesses on the planet. It's just that cfs is a broad term. I cfs/me for years andctried gupta, reverse therapy etc all of which were helpful and beneficial but not enough to recover. I then found out i had ehlers danlos classic type 3 not cfs/me so perhaps the reason I didn't respond to emotional work as well as others with "cfs". What your doing I'd important valuable to the cfs community. There are some darn right horrible angry cfs people out there but there are also people like me who knows emotion cannot fix my "cfs". I'm not angry at all I'm just saying it's complex area and I understand why people get angry regardless of how disrespectful it is
Gaslighting is a serious form of manipulation that is done intentionally by highly manipulative people who know it's not true. I would argue that some of your examples fall in the category of cognitive bias, where people think they know what's true, but they don't, which might be equally harmful. And you need to have your own back if you want to heal.
The basis of your argument just further divides an underserved community. You are literally the uber-gaslighter in this video, and it's disappointing. The bigger discussion is to delve into the fact that the terms "ME" and "CFS" are based on clinical symptoms only as we lack biomarkers. Every major researcher in the field has admitted that "the illness" is heterogenous. We are called the same thing, but we don't all have the same thing, although we share some major symptoms. Many of us have a diagnosis of ME/CFS...but we are not the same.
That is probably true although it could be something like we all have a particular gene and different things have flicked the switch. What about this video made you feel gaslighted? I don't think anyone is saying that everyone can recover or that we are responsible for not recovering. It's an almost impossible task but getting ideas from those who have recovered might help us. I haven't improved at all in 6 years and sometimes I don't seek solutions. Other times I do look to see if there are any new ideas I can try. We don't know the true cause so we don't know for sure that we can't recover, do we?
