how to explain chronic fatigue syndrome to friends and family

Struggling to explain what living with Chronic Fatigue Syndrome (CFS) is like to your friends and family? You're not the only one. Many people find it incredibly difficult to bridge this gap and truly convey their experiences.
In this episode of our podcast, we dive deep into the common challenges faced by those with CFS. From feeling misunderstood to dealing with day-to-day isolation, we explore it all.
More importantly, we share powerful stories and strategies from individuals just like you, who have learned to effectively communicate their condition to those closest to them.
What You'll Learn:
- Practical tips on explaining your symptoms and the impact of CFS.
- How to overcome the frustration of feeling misunderstood.
- Stories of resilience and understanding from others with CFS.
Your journey is valid, and you don’t need anyone else’s validation to recognize that. Watch now to find new ways to express what you're going through and start transforming your interactions.
Exciting Opportunity:
Don’t miss out on our Foundations by CFS Health, a short course designed to help you stop pushing and crashing. This program will guide you on how to stabilise your energy levels and start making real progress. Join the waitlist today and be the first to know when doors open! www.cfshealth.com/foundationwaitlist
Subscribe for more insights: Don’t forget to subscribe to our channel for more updates and tips on managing chronic health conditions like Chronic Fatigue Syndrome.
Share this video with someone who might find it helpful, and let’s expand the conversation about CFS together.
Connect with us:
- Visit our website: https: www.cfshealth.com
- Follow us on Instagram: cfshealth
#ChronicFatigueSyndrome #CFS #HealthPodcast #cfsme #mecfs #cfsrecovery #myalgicencephalomyelitis
Here are 4 ways we can help:
1. Join our free community to meet others, be inspired, and get more recovery info - groups/cfshealthrecoveryhub
2. Watch the newly released past members "Guest Panel" Workshop where they share their top 5 recovery secrets - www.cfshealth.com/guestpanelreplay
3. Get our free most popular recovery trainings:
- Find your baseline - Stop pushing and crashing - www.cfshealth.com/baseline
- The 3 stages of recovery and what to do in each one - www.cfshealth.com/the3stages
- The "9 do's and don’ts" PDF - to decrease symptoms and improve energy - www.Cfshealth.com/pdf
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.com/form

[@CFSHealth]

Jump on the foundations waitlist and get all the details sent to you first - www.cfshealth.com/foundationwaitlist

[@jamiefriend9513]

I’m 30 years old and a father to two children under two years of age. A year ago I remember being the person who can do everything and support my family. Since I have this condition in the beginning of this year, it has changed my life where I feel like my old self has died and will not come back. I have to come to terms with letting my old self go and accept who I am today. I’m still getting my head around that bit. My wife and family are slowly understanding it. To me this is a disease that can take over your life physically, mentally and emotionally. Since having this I have felt isolated and alone because this is something even I don’t understand. At times like this we need the ones we love to understand us because sadly society itself does not which is why majority of people don’t understand or know that CFS actually exists.

[@deannastang8702]

Hello Toby, After several months of trying to convince myself that I really do not suffer from Chronic Fatigue, that it is all in my mind, I continue to push myself mercilessly thinking that if I just keep going that this malady will eventually wear off. Last week was an eye opener for me as I pushed so hard with each activity which I had limited to two per day, I went overboard trying to prove to myself that mind over matter is the key to overcoming. What a shock when I crashed and was forced to consider the fact that my "mind over matter" was not working and I spent several days with every muscle in my body aching to the point of being painful and having to lay down for a good portion of several days. What a waste of life, I "m thinking throughout this whole time. I am in my mid seventies and unlike my sister who is in her mid eighties she is full of energy and able to lead a very active and full life from six in the morning until she goes to bed around 10pm, This makes me feel so lazy as she does not understand why I am not able to keep up with her. I believe my CFS was brought on several years ago having gone through one traumatic experience after another over the period of 25years or so and remember that I was suddenly aware of my lack of my usual energy but pushed on and tried several remedies to find something that would restore my usual energy level. It just kept getting worse and worse. About a year ago, I came across your videos while trying to research online a solution as my doctor could not give me any explanations or hope. I had never heard of CFS in my life and I decided to listen to what you had to say after I answered the ten questions you had placed in a video. What a surprise when I ticked off yes to eight out of ten symptoms for CFS, I thought about that for some time while watching more of your videos but could not convince myself that I really could be suffering from this malady. But then last week happened when I was finally forced to face the fact that I really must be suffering from CFS. Where do I begin now that I have finally accepted the fact that this is not a passing season and that it is not all in my head? I eat right, I walk every day with my sweet dog, I take water aerobic classes, I volunteer twice per week, go to church every week and I try to keep up with daily chores. I live alone as my husband passed away last year and have had to learn how to do the things he always took care of. And as this video talks about, I do feel alone in this journey and as you say, family and friends cannot understand the struggle that I am experiencing. I would really appreciate your input. Again, thank you Toby for your very informative videos and as you have said many times, I must believe that I can get through this and lead a full and active life once more. God bless you.

[@janerowena4023]

It's definitely worth while doing the Foundation course to get you going in the right direction. I too lost my husband last year, I feel for you. He was so supportive of me.❤

[@janerowena4023]

Acceptance has always been more important to me than understanding.

[@homemakersheart3614]

This is so important. I remember many years ago when I came to that point of "he just doesn't understand", and being so sad. Wanting compasion, wanting to be loved and heard. When it doesn't happen because they just don't understand, I learned to practice the very things I was seeking, but do that for myself. I know, it sounds cliche`, but being your own cheerleader, having stickers and motivation, being in a POSITIVE group that will celebrate that you can touch your toes today.....sooo stinking important!!! Love them where they are, giving love, we get love. Thanks Toby...~Dee

[@B3l0v3d05]

What do I do? No family to help and husband has left me after my diagnosis so now facing losing my house while severe, mostly bedbound. I have caregivers through government insurance, so thankful. But I don't see a way forward now because I was the one who did it all before I got sick. Now I can't keep myself afloat even...

[@artandrea5348]

So sorry your husband left you when you needed him the most. Give your life to Jesus, He will get you through. 1 Peter 2:24- "By his stripes, we are healed." When everyone else forsakes us, our Heavenly Father never will. He is capable of so much more than we can imagine. Prayers for you🙏

[@B3l0v3d05]

@@artandrea5348 I have. Years ago and follow Him closely. Since 2004. Twenty years

[@anna-marieeasmus7529]

I think the need for understanding is actually a cry ffor help - for someone to help calm your nervous system. I remember a long time ago while i was studying i had this last subject of my final year that i just could not pass. The day i found out i have failed ot again, i was so upset and overwhelmed, i could not calm my nervous system and i cried so much. When my husband got home he just quietly mad me some sweet tea, put me in bed and hold my hand, while telling me of his day in a calm and relaxing voice. He was able to calm my nervous sytem with this, much faster than i could do for myself. With long covid i really needed that so much, but could not really verbalise it and he was in a stress state as well, so we could not help each other. I sometimes wonder if he could in the beginning stages just hold me tight and comforted me, how things will have worked out. Eventually i just quit trying to talk to him about anything, because i just did not have the energy. It helped some, but i am still severe. I believe it is because of reinfections and reactivation of the virus.

[@moriemalowany5345]

co-regulation, Peter Levine's work, I think you are describing something in this area. I struggle with it too, as people often don't understand

[@loveishappiness7330]

Read the book medical medium, look at reviews too 🙏

[@loveishappiness7330]

Read the book medical medium, look at reviews too 🙏

[@penneymcnutt4413]

So timely for me, as always. After 10 months in the program, I've finally fully committed and accepted that it will take as long as it takes. However I'm still struggling with the need for people to understand (my partner is wholly understanding, others in varying degrees) but the info in the video makes perfect sense - I need to stop trying to make people understand and focus all that energy on my recovery! Thank you, Toby & Ash!! ❤

[@kimgilmore2065]

Hello Toby, thankyou for your short videos, I took myself to Bali, my happy place thinking I'd be better but I feel terrible , I keep everything to myself and pretend IAm fine ,just like home , Thankyou For Your Time ,Kim 🌺

[@DG-ei6ki]

I just don’t see how people can ‘recover’ I can see that we can learn to live our life with this condition but we don’t ever fully recover or get rid of it..

[@user-qt9bi4wv8g]

Thanks guys for another Monday morning mini support session🙂, with spot on sensible advice and encouragement.

[@CFSHealth]

Glad you enjoyed it

[@SallyAlexander-zr6ls]

Thank you for this, I am lucky as I am surrounded by friends and family who understand...I'm on my healing journey and your videos are really helping as is the book.

[@Jcf990]

Thank you for this video! I’ve been struggling with feeling misunderstood a lot recently but this makes a lot of sense, how can they?! They don’t feel what I feel and that’s not their fault. A good reminder

[@DG-ei6ki]

I just can’t find my baseline, no matter how hard I try. I’ve got a good routine. I get up early every day now ‘ I take all the supplements & vitamins (as well as painkillers) I try to rest in between my busy schedule but I still ‘crash & burn’ and end up bedbound at least for 2-3days every week. I’ve learned to slow down & I can’t do the things I used to do but struggle to find my baseline 😩 it’s so frustrating! I love your videos and podcasts as I don’t feel as lonely! 😢 people who don’t have fibromyalgia just don’t ‘get’ it..

[@penneymcnutt4413]

If you're still pushing and crashing, then you must STOP it. Toby suggests starting with doing half of what you think you can do without crashing. Baseline is what you can do without feeling any worse. Crashing is definitely feeling worse! It took me about 3 months to understand what my baseline is, and even then, life kept happening and I kept crashing. Only recently have I really just stopped doing the things that make me crash, and I already feel better. Once you've established your baseline and maintained it for a good while can you begin to add tiny increments of capacity. I hope this is helpful. If you aren't in the mentorship program, you should seriously consider starting with joining CFS Health's Foundations course. That's how I started last June and then joined the Mentorship. No way would I be getting better without this program!!!

[@marieweiss1634]

What you're doing sounds wonderful. How much is the Foundation course?

[@alexandrecouture2462]

Thank you!

[@CFSHealth]

Welcome!

[@beccaprice2218]

Thanks Toby and Ash. Such good advice. I thought I was in recovery, the last few weeks I've had a lot of energy and been doing more Saturday I crashed I've been unable to to get in the shower or even brush my teeth. My husband doesn't unable. He said that I should be doing more around the house I've tried explaining that I have no energy but I think he feels I'm being lazy

[@CFSHealth]

Our pleasure!

[@LynnCalderaro]

Thank you.... How do you get on this program

[@LynnCalderaro]

How much is it? And how long is this program

[@LynnCalderaro]

Mentorship yes!!! I am interested!!

[@keithabrowning6106]

Helpful tips ...but I was hoping for an answer to the title of the video...How to explain CFS to friends and family....ie what can one say to them when they ask or want to know, that is short and concise?

[@DG-ei6ki]

Exactly there’s no answer, how do we get them to understand…they’re just saying don’t waste your time trying 🤷‍♀️🤦‍♀️

[@cathycoppin5682]

Share vidio

[@keithabrowning6106]

Thanks ..I hadnt thought of that! I will rewatch it....probably only send it to anyone who actually has asked forinfo.@@cathycoppin5682

[@LynnCalderaro]

CFS isolation mentorship program

[@LynnCalderaro]

CFS foundation program how much is this?

[@LynnCalderaro]

How do you get in the program.?

[@anna-marieeasmus7529]

See the link in the first comment.