7. What To Do When Your Friend Has An Invisible Illness - ME / CFS

The most important things you can do to help a friend who's got ME.

[cjdevries]

Thank you so much. Compassion is the best medicine. It is empowering! A few days ago I was in bed after a long day of dealing with ME/CFS and my parents were having a discussion about how my symptoms had worsened and they were beginning to frame it like I was choosing to withdraw (which is not the case). I was not able to speak more than a few words at any one time without severe pain, but I don't think that really understood what what I was going through in my body. So I was laying in bed with a lot of sadness, and feeling quite hurt. Then through the wall I heard my dad say: we just have to have compassion for what he's going through...I almost cried. It was the right thing to say at the right time and it took away most of my worry and allowed me to get to sleep. Compassion!

[thetrollbasher]

@GetWellFromME Ok, I thank you for giving me a better understanding of this "illness".PEACE & LOVE TO ALL OF YOU.

[DominieBush]

WONDERFUL VIDEO! I've had Fibromyalgia since 1982 and CFIDS/ME since 1987. For nearly 30 years, I have endured the misunderstanding and stigma of having a chronic invisible illness. Despite being a high-achieving, conscientious, Type A personality, I have been called lazy, told that it's all in my head, that I don't try hard enough, believe enough, I don't LOOK sick, etc. It has all been so hurtful. This video explains CFIDS/ME/FMS so well. THANK YOU FROM THE BOTTOM OF MY HEART!!!!

[wendievanheerden]

Wow! You really spoke to me! Its invisible, you are so right. I think we spend far to much energy on trying to convince your friends that we have M.E.
Its a hellova disease and when the episodes come its a great leveller.
I hate that people think its more a mental disease.
Be strong people and be kind to yourselves.

[RockOutWebShow]

This video made me cry! I've had CFS for almost five years, and it always makes me emotional when I hear someone explain it well. It's so rare! Recently I've been dealing with some college professors of mine who don't understand that I really am sick. I'm so lucky just to be able to stay in college! I'm registered as a disabled student and still some professors still question the reality of my illness. Especially the first half of this video, I felt like you were talking about me.

[Rubyisgrowing]

This is SO supportive, I can't believe how perfectly this reflects how I feel and my experience.

[Frewtsalad]

Thank you! I particularly like the point that just because we might say no to a proposed outing or invitation doesn't mean we don't appreciate the offer. It's awfully hard when everyone just stops inviting you because your always sick, then even if you hit a good week, you find yourself isolated.

[MrsGaroline]

Thank you. This video made me cry! It's as if you were talking about me. I've got a supportive husband and don't know how I'd cope without him. I'm going to share this video.

[GetWellFromME]

@thetrollbasher The huge difference between depression and ME is shown by: people with depression find it difficult to be motivated, but often feel better after some exercise or activity. It is the complete opposite with people with ME, who are still almost always very highly motivated (despite everything), but they actually get very ill after doing the smallest amount of activity. I really hope that helps.

[angiemacslilmitesanmore]

The tree from my window is my constant companion throughout the sound of my heart remindes me that life still offers a chance and watching this tells me im not alone and reminds i have i reason to carry on.... X

[GetWellFromME]

I'm glad it's helped that you've felt it relate to you! I hope your college professors can find out some facts about the illness and might become more sympathetic and supportive.

[Daystar]

I so very much appreciate this video. I plan to share it on my Facebook page, just on the off-chance, iffy hope that my 'friends' and family may actually take a moment to watch it. They haven't with the other videos I've posted, but..perhaps they will this time. I'm in tears, I am alone, I am misunderstood and I am very, very ill...but am told I look fantastic! Sheesh! If only they really knew what I feel like on the inside. If it were them suffering, they'd be in a corner, weeping!

[DrFrankyDolan]

Great work, my friend!! You explain this so incredibly well.
I live with M.E. as well. I too give my every moment of energy trying to help educate people about this invisible disease.

Let's keep going, and keep telling our stories. ..Thank you, my good man. I wish you, and all other ME/CFS survivors very well.

Sending love to all~

[settspin]

@SuperSaxophoneplayer
A great film about ME/CFS entitled VOICES FROM THE SHADOWS recently screened at the Mill Valley Film Festival. It was made by a woman in Great Britain whose daughter has been ill w/ME for years & it is now being made available to stream online in the USA only until October 30th courtesy of MVFF & MUBI. You Tube won’t allow me to post the website, but try to find it!!

[longtail]

I was driven to try to commit suicide in my early 20's from ME that wasn't getting treated because EVERYBODY thought I was just making it up. I could get no respect or help from family, friends, or the medical community. I was actually flat out ignored in a hospital. I was treated like I was scum. After almost a year of this my mind SNAPPED and they decided in the hospital after I cut my wrists that I maybe I was really serious after all. 

[jenmorgan]

Sending this to my friends. So grateful you have made these videos.

[GetWellFromME]

@hi771lrt As I understand it, other neurological illnesses such as MS and epilepsy, as well of course as HIV / AIDS, also used to be treated by most doctors as being "all in the mind" or imagined illnesses. I do hope that more doctors would graciously accept the obvious and overwhelming evidence about ME, and that support and even treatment will improve.

[DrexelGregory]

Yes, believe them. My dad didn't believe me, ignored my pleas for help, and tried to laugh it off when he saw my doctor's treatments worked. I cried because I was so desperate to get better

[GetWellFromME]

@DominieBush Thank you, I'm so glad you feel this video can relate to you, sorry to hear you've been so ill for so long, I know there's nothing worse than to be so ill and then to be blamed for it ourselves! Best wishes.

[GetWellFromME]

So sorry to hear that - that must be incredibly painful too?? And so awful when families don't believe in the real disease that you have. Sending you best wishes.