The Hardest Parts of Chronic Fatigue Syndrome: Overcoming Invisible Illness

Рет қаралды 4,220

Күн бұрын

Discover the toughest challenges faced by those with chronic fatigue syndrome (CFS) in this video.
We delve into the invisible nature of CFS, the lack of understanding from friends and family, the emotional burden of guilt and grief, and the frustration of navigating the healthcare system.
Learn how to cope with these hardships and find hope in the recovery journey.
In this video, we cover:
- The invisible nature of chronic fatigue syndrome
- The emotional toll of isolation and misunderstanding
- The impact on relationships with friends and family
- The struggles with the medical community
- Practical tips and free resources for managing CFS
🔗 Visit our website for more support: www.cfshealt#chronicfatiguesyndrome #mecfsrecovery #mecfs
Here are 4 ways we can help:
1. Join our free community to meet others, be inspired, and get more recovery info - / cfshealthrecoveryhub
2. Watch the newly released past members "Guest Panel" Workshop where they share their top 5 recovery secrets - www.cfshealth....
3. Get our free most popular recovery trainings:
- Find your baseline - Stop pushing and crashing - www.cfshealth....
- The 3 stages of recovery and what to do in each one - www.cfshealth....
- The "9 do's and don’ts" PDF - to decrease symptoms and improve energy - www.Cfshealth....
4. Want help professionally with a step-by-step recovery plan specific to you? Fill out the application form and the team will send you the details - www.cfshealth....

Пікірлер: 52

@johnbday4764 4 ай бұрын

After 40 years with ME, I got the “ do you think it’s a mental thing” This from a young well educated doctor I find these videos somewhat emotional, my first time hearing someone talk about how Ihave felt . Thank you so much.

@LynnCalderaro 4 ай бұрын

I have no friends... I finally saw one friend and I left her feeling guilty and.. I have no family support at all...

@LynnCalderaro 4 ай бұрын

She said oh I thought you would have had a shift by now

@LynnCalderaro 4 ай бұрын

This is just how I feel

@Milliemollym 4 ай бұрын

Yep...me too.... thank you for saying you've had it 40 years. For me it's 46....I was 14....60 next month...I find I can't listen to people complaining about having their life ruined when they've only had it 10 years.... The intense pain I could cope with... it's having to dumb yourself down cos my brain won't work, leave jobs, even part time kills you....and see people who don't have the skills you have get promoted over you. Can't even do simple stuff so forget about potential. I'd have liked to go to Uni to do art but couldn't even contemplate 13 hours a week. I'm ready to find out what this Baseline is....but I'm not able spend £1000s doing so. I've not had a career to speak of so struggled financially. It's never being able to plan to do things and missing out on family occasions that they plan and say "oh you can't do London in a day"...so i say "No id need to stay a few days"...they arrange that but don't let you know. You'd think that they'd remember you're disabled after all these decades...but no....I've missed 40ths and Hen Do's etc...you're expected to fit in...or be ok with missing out. It's so hurtful

@Milliemollym 4 ай бұрын

@@LynnCalderaro Yes..I get it...They also pile on the religious guilt too. Tell you that God wants you to go to meetings/church several times a week...as if you've been unfaithful and fallen away.....I say " I think that what He wants is for me to be Well and Happy". We are allowed to be happy...

@yvonne3903 4 ай бұрын

Hardest thing for me was getting the energy to go to the doctors. Rest for weeks to get enough energy to get there and collapse afterwards for weeks.

@Milliemollym 4 ай бұрын

And you get there and they tell you that you look fine!

@beckyreithmayr5281 3 ай бұрын

Same… then trying to coordinate the blood tests and the appointments that are dependent on each other. But worth it, and we’ll get through this!

@tanyawieczorek6603 Ай бұрын

How are you doing now?

@Jolei33 4 ай бұрын

My son and I have chronic fatigue at the same time…activated by mold and heavy exposure to EMF. Worst part is his school turning against us and treating us like criminals …pressing charges because he is unable to attend school. Hes only 14 and that is a ton of stress. I won’t let them win and bully him into crashing. We are fighting legally but to be sick and have to deal with all of this is ridiculous.

@AnrupB 4 ай бұрын

That is the most ridiculous experience ever! Shame on the school. How is that even legal?

@Jolei33 4 ай бұрын

Unfortunately many states have criminal charges available for truancy. Usually it’s related to incompetence on the parents part floor not getting the kids to school. However, my son was a great student with no prior disciplinary issues and great grades. These charges should not be added onto already unreal stress levels associated with this condition. Many states have these charges for truancy.

@tanyawieczorek6603 Ай бұрын

Wow, that's terrible!

@deanablythe9394 4 ай бұрын

I am so very pleased I found your KZbin channel, it is the best I have found that has helped, you have been able to describe what I have been going through throughout this long illness. I have overcome a lot of the things you talked about today, but nevertheless, I remember how they affected me at the time and can look back and see how far I have come and how I did it, for instance removing guilt from my life of the things I can no longer achieve. I very much appreciate your time and effort and wish you well, and all the people who suffer from this disease. Thank you Toby.

@CFSHealth 4 ай бұрын

You're so welcome!

@jacquelinemcgowan8164 4 ай бұрын

wow my mum said many years ago, if I had a pot on my leg everyone would understand but no one sees my arthritus and the pain i am in, but no one sees my grief i bear every day either, honestly life is hard at times and if we could only have a little more compassion, after my daughters passing i do try to give others my time, i am trying very hard.

@KennethBain-h9j 2 ай бұрын

Hi toby I live in England I've had cfs since I was ten years old also restless leg syndrome ,I'm now 73 years old my life as been such a struggle ie cfs and trying to learn at school,working, trying my best to be a good father,husband it took the doctors until I was45 years old before I was diagnosed because nobody believed in cfs I was born in 1951 I've struggled so hard all my life just to feel normal nothing ever changed I still have every single symptom of cfs I hope you help as many people as you can with this ilness I've had cfs now for 64 years I still try to keep a smile on my face and have a very understanding partner,I will try to take the advice you give I wont give up God bless all cfs sufferers. Mr ken Bain. 😢😢

@morwennamcgowan4125 4 ай бұрын

All sounds familiar I kept pushing ended up in bed for 3 months ….. no one understand about CFS it’s not just tiredness 😢 AND there’s no way to tell them to understand

@sparrowbarnesmusic5864 4 ай бұрын

My brother insists all i need is regular naps and i will be ok and as for pain i have from cfs and fibromyalgia he says pain is all in the mind. How ignorant can some people be. They just dont understand or get it. I tried to explain. But no he just didn't want to understand it. It was a way to silence me too.

@morwennamcgowan4125 4 ай бұрын

@@sparrowbarnesmusic5864 fribro also and the pain is so real beyond a aching body …. Gentle hugs

@tigran.ovakimyan 4 ай бұрын

Hi Toby! I have got a question So my question is “if someone fully recovers in a year or two and feels kinda symptom free, does it mean, that the illness is gone and crashes won’t happen? Or it means that you still have to live a very disciplined life forever, cause otherwise you will trigger a new crash?”

@Milliemollym 4 ай бұрын

I think that if you're Recovered... you're RECOVERED....that's how I understand it....but I ve been in the Reintegration stage for decades...so I only know that Alex Howard (Optimum Health Clinic ) etc is totally well and able to work 60 hours a week. You don't want to return to old unhealthy ways of living but your system won't be as sensitive.

@hshfyugaewfjkKS 4 ай бұрын

I recovered toa bout 85% after about a year to year and a half, but then I tried to push myself and go back to working out and doing all the things. Combined with many emotional stressors I fell back again and now I am working on getting back to where I was. I think moving back to full recovery requires very very slow titration back to where you were previously. Just my experience.

@carlapilbro1344 Ай бұрын

Thank you ❤ this has helped me lots

@CFSHealth Ай бұрын

Glad it helped!

@Zeera369 4 ай бұрын

Thank you Toby 🥹

@CFSHealth 4 ай бұрын

You're welcome!

@Favourandblessing-24 3 ай бұрын

I said to Dr I was grieving after lost my whole family Dr said your depressed! Not all sicknesses are Visible

@karenburdett7571 4 ай бұрын

Thank you for this video Toby. Yep, it hit home when you mentioned wanting your old life back! I have ridden and owned horses all my life, but when I lost my last horse 2 years ago, I decided it was best not to have another because of my health. I miss it so much. So after watching your video, I feel that I need to work on grieving the life I had in order to focus on my future and get better fully. This may be the missing part of the puzzle. Thanks again for all your free content and for caring 🙏 So grateful.

@CFSHealth 4 ай бұрын

Glad you found it helpful 💙

@tanyawieczorek6603 Ай бұрын

You were fortunate to have horses, I'm jealous lol 😊 I love them too 💕 but unless I win the lottery and beat Long Covid I'll never get one ..

@richardlong5928 4 ай бұрын

And furthermore, the doctors tell you exactly how long it takes for your bones to heal. For me, not knowing if this was going to last forever or not (it seemingly was) was absolutely the hardest part. The anxiety of it kept me in fight or flight and only exacerbated my symptoms

@EmmaG-dv6vk 4 ай бұрын

This 100%! Being told that 'this is how it is, you're not going to get better, just accept it' and then no support to follow up that massively devastating blow.... to this day i don't know how the health service are allowed to get away with that- its so mentally and emotionally damaging. honestly it made me suicidal and also was so destructive as I pushed so hard to prove them wrong and ultimately caused my health to deteriorate even more. So glad I eventually found this channel and am now gently working to turn things around. 🫶

@margaretwhittaker2291 4 ай бұрын

As ever, Toby, you nail it with great compassion and encouragement. It keeps us all going. The guilt work shop is a wonderful thing. I had to work through it for many years. God bless n many thanks

@CFSHealth 4 ай бұрын

Thank you 🙏

@deannastang8702 12 күн бұрын

I am so grateful to hear from this video that I can now really believe that this is not all in my head or attitude. Which is why I have pushed myself with variety of activities and wondering why I crash for days on end trying hard not to give in to despair, and yes, I feel so guilty and isolated from family and friends because they simply do not understand what I am going through and why I cannot accept their invitations to join them. Thank you Sean. I will continue to follow your videos with a new hope of steady recovery. God bless you, Sean

@IndianLondoner 4 ай бұрын

Namaste everyone ❤.

@CFSHealth 4 ай бұрын

🙏🙏

@cathycoppin5682 4 ай бұрын

Thank you toby. X

@karenanderson2935 4 ай бұрын

I was diagnosed 13 years ago and am still at the "I don't know what to do stage" I'm intrigued to know what I can do to move forward...

@Favourandblessing-24 3 ай бұрын

Amen

@thjbird 22 сағат бұрын

My family has their own problems. They don’t want to hear mine. And if they should listen, they just say “you’re depressed” or “get some exercise to get your endorphins flowing”. Everyone’s lives are complicated for sure. I first sensed that something was wrong when I was about 5 years old. I’m getting old now and it’s getting worse.