ME/CFS: 'you look fine' & Post Exertional Malaise

ME/CFS sufferers may not "look" sick, but they might be suffering more than anyone else you know.

[peace]

What I find really difficult about this illness is that sometimes I feel like I have more energy and at the beginning I used to get really excited and think that I was better and try to do the stuff I did before I had it and then I would end up bedridden for weeks. Now if I feel good that I have energy, I have to make sure that I do not do too much. It's really hard as it's like being in a prison where the gates are open but you can't go out of them.

[MissBlueEyeliner]

It’s always so good to hear someone describe the way you feel so perfectly when no one else around you can understand.
It makes it all a little less lonely.

[danihyde]

I'm a type of person who can turn on an outgoing personality when I need to, like for a job. I also truly love makeup. Because of both of these things, MOST people assume that means I'm healthy as I can appear to be. Your talking points are seriously two of the most difficult aspects of this illness. It ends friendships, relationships, and can make family relationships difficult when they don't understand. Thank you for your videos to reassure us living with ME/CFS that we aren't crazy and it's just that many people, and to clarify sometimes very loving people, can have egotistical viewpoints when you try to explain your struggles.

Another GREAT point I'd like to add that's in line with this video is, "You're so young! Of course you're healthy!"... Yep. Because every illness chooses what age to affect people. There are no children with cancer, heart conditions, etc in the world. So me at 28? SUPER HEALTHY guaranteed! XD

[diesel]

I've come to hate the words: You look fine.

[williamprice]

Before I found my current doctor I had a previous doctor tell he wanted me to take adderall. Fortunately, even before my diagnosis, I had the sense to know that that was a terrible idea. Later on I talked to the same doctor and told him what I had and he still wanted to put me on adderall. Glad I never took that drug and glad I found my current doctor who has more sense. Adderall is a stimulant. More specifically it is a sympathomimetic (stimulates the autonomic nervous system). ME/CFS patients have autonomic nervous system instability and orthostatic intolerance. This means stimulants make things worse. The former doctor basically told me I looked fine and I should snap out of it. Not only is it really is unfortunate when friends and family don't understand, but there are some doctors who are clueless. I think I saw a statistic that is takes ME/CFS patients seeing several different doctors before they're diagnosed correctly. Keep up the good work everyone. I know this is the most challenging thing I've dealt with in my life. Also, there are some really good doctors out there too.

[catchappie]

You picked one of my hot buttons! "Gee, you look fabulous." I jokingly tell people to wait on and they can watch me wilt. Thanks for making this video. You are a treasure! I guess I'm not as crazy as I thought I was!

[nickylodge]

Thank you, I have just had a friend look swivelly eyed when I tried to explain that if my son takes a shower that is all he can do in a day.

[elizabethdarley]

Hi, great video. I'm thinking I might have ME CFS. I have been diagnosed with Fibromyalgia since about 2019 but I now obviously have post exertion malaise now after I did my normal part time online tutoring for an hour at 8.30am on Tuesday.. 2 days ago. I had all Wednesday yesterday exhausted in bed and it's the same today. I can't even take a bath. I think I'll mention this to my GP today as they're brilliant and they really know about Fibromyalgia and ME CFS.
I've subscribed to your channel here. I hope you have positive and professional support in your ME journey.
I have a brilliant husband who is very down to earth and has patience, understanding and humour. He's very skilled at cheering us both up. Thank you.
Kind regards from
Elizabeth in Yorkshire UK

[Dancing_in_the_rain]

This is a truly wonderful video. This is a perfect video to show to family and friends. I look fine but I feel horrible. I try to educate people but I do understand if people do not get it. It’s hard enough for me to accept my condition. This is an excellent tool to assist in understanding what a person with ME/CFS deals with daily.

[samanthamills]

Thank you SO much for sharing, a couple of your videos have brought me to tears this morning because THIS is what I find MOST difficult about living with ME/CFS....but I can never find the words to make other people understand. Sometimes even attempting to explain is too exhausting....and with most still unable to understand, I often don't even bother. So again, THANK YOU!!!

[lifewithspirit]

Johnny, I was sick with a mystery illness, on top of M.E., during the pandemic and had to stay with my sister. When I visited the dr, who actually diagnosed me with M.E., he said, “Well, you look good.” That was the last thing I needed to hear, while struggling with my lungs, stomach, and heart!!! I was as sick as a dog then, and it really felt as if he didn’t take me as seriously because I looked so well. I’m told that all of the time, and it is a compliment, but it discounts our experience with chronic illness. Btw, he wasn’t able to diagnose me, but I ended up having h-pylori, which I wouldn’t wish on my worst enemy. The symptoms are better, but I still have it and have been diagnosed with treatment resistant h-pylori. I haven’t even talked much about it on my own channel bc it’s been so traumatic. Be well, Brother!🌻

[turduckenwrath]

ok subscribed
💕 you videos- you say exactly what I don't have the energy to express

[chickenbites]

PEM is a massive issue in my life, always has been since I caught glandular fever/Epstein barre virus

[rachelanne]

I feel like my family still doesn't understand this illness at all... Even though I send them links to information on the internet describing the symptoms. I've also had a few remarks from them saying that I look fine and seem find by my social media posts/ text messages etc....I told them that you can never know what someone is going through or how they feel by a text or social media post or by the way they look on the outside. This illness has made me very compassionate and understanding towards everyone I meet and know in my life. I can truly relate to how they are feeling and try my best to picture myself in their certain situation.

[neferbey]

Yours is the first channel I've found dealing with ME. I think I have it, but not a severe case. I've watched other videos of people who have it a whole lot worse than me. I just do what I can by pacing myself. For everyone going through this and all debilitating conditions, I wish you all the best. Thank you for bringing awareness.

[SatumainenOlento]

Hah, I went to doctor complaining fatigue and he adviced me to sleep more and go to work. I think that it was, because he is a workaholic and for him, the work is the most stabilizing thing in his life. People even doctors understand things only through their own experiences. He was a nice doctor who really wanted to help me.

[siennathompson]

Thanks for making these videos. It is good to see a face for these discussions and not just on forums.

[mazeymay]

You are an angel, thank you for your videos!

I don’t feel like I’m alone anymore.
Plus you put into words what I feel, what I want to say,
But have difficulty expressing it as clearly as you. so very helpful for me, thank you

[claredunn]

Yes post covid and just figured out this is what is going on with me!! I tried to go back to work, been recovering for 2 days. Thanks for sharing!

[DanaRToliver]

thank you for making these videos - no one in my family understands this, we are not lazy & because we look healthy people including doctors think we are lying