I know, honey. I've had the same people ask me the same questions over and over as if someday my answer will change. It hurts to feel rejection on top of the physical pain we are already feeling. I remember the day I was diagnosed. I mean, it's not like I wanted to be sick, but I cried in relief that someone had finally told me what was wrong with me. It was so vindicating, but there are still lots of people who don't believe me. Every Sunday at church, people asks me why I'm limping. I keep thinking, "You're just noticing this?" But, I don't say it out loud. I just ordered that book that several have suggested, "You Don't LOOK Sick." I think it will be good. Hold your head up, dear one. You're not alone. Blessings.

One thing you could try...tell your doubters and harassers about the multiple studies that have shown that of all the chronic illnesses and many of the acute illnesses, we have the worst quality of life. Overall, we have more physical distress than late-stage cancer patients or HIV/AIDS patients.

You could also tell them the truth...they're not supporting you, and they should be ashamed about that. The idea that they're making you feel bad on top of all the burden of this illness is disgracefully bad conduct on their part.

I doubt if it will help, though. The only way I've ever found to stop the harassment...and make no mistake it is harassment...is to cut them off, eliminate them from your life. People either support us, or they don't...that's their choice. If they choose not to support us, we eventually have to get rid of them.

When I told friends, business associates, and family members about my diagnosis, most of them actually laughed at me. There were only two family members and one business associate who didn't act like it was all a big joke. Both of those family members are deceased now, and I lost my business. So I just live completely alone now.

I am going to look of that book right now and try to order it .

Richie D - I am so sorry for your losses especially since they are because of illness over which you have no control. :(

Why are we judged as worthless /a joke/ lazy/ useless - we did nothing wrong. A smoker with lung cancer gets sympathy, an alcoholic with liver disease I can't understand why we receive such unkindness.

I feel all i do is validate this illness to people who frankly aren't interested anyway.

But to see shame and disbelief in my parents eyes cut me to the core (this is not the first time either - the first time was finally admitting I had been a victim of domestic abuse for many years - the reaction was the same then)

Im beginning to wonder if its easier for people to disbelieve us rather the face the fact that ANYONE can get this at ANYTIME and there is NO CURE .

Another thought just occurred to me - one of our key factors for healing this is hope, if others take our hope , they are denying us our 'Treatment' you wouldn't take insulin from a diabetic and say get on with it now would you.

Sorry to waffle on I'm just working it all through in my mind I guess - I have to process it all somehow to stop myself being bitter and angry and a person I don't want to be .

With hugs x

Well, there you have it. You figured out what's going on. People don't like to hear about problems that can't be solved. I am so sorry your parents have given you that same look at several key times in your life. CFS and abuse are two things that aren't your fault. It seems easier to blame the suffering person because it makes people feel like they know what you did wrong and if they can just avoid it, they will not have to suffer like you have. It's a very complex defense mechanism that hurts other people like crazy. I have had to cut some people out of my life. It's hard with family because you didn't choose them, but you may have to limit your exposure to them if they really keep on harassing you. I'm just so sorry. I know how you feel. Sending you love and support.

The world will catch up one day and all those people who asked the stupid questions will look very unkind and probably realise how cruel their questions really were.

When people are just curious it doesn't feel shaming. Shaming question are unacceptable. I had a doctor ask me why I couldn't just get out of bed and walk when I was bedridden.

Most of the time these people aren't looking to understand...they are judging so don't waste time on trying to change their minds. They are narrow-minded and that is their issue not yours.

We all understand what you are going through..it is very real and incredibly difficult and you need support not judgement.

I have ordered the book and I'm now looking into these Coconut Oil supplements that have been mentioned on here.

Im going to turn my anger and frustration around into determination to fix this as best I can myself , it seems the only way.

This is an amazing group and I thank god for you all x

Yeah, it's miserable. My mother has always been the worst, I'm her only daughter and I'm "supposed to be taking care of her in her old age". Also, I've never really done anything to make her proud. Apparently raising two fantastic daughters alone doesn't count.
That disapproval and feeling our supposed love ones are ashamed of us is just not a good or healing feeling at all is it?

I'm overweight as well (tad over 210) so the first thing I get is "if you just lost the extra weight you'd be just fine"....heard it for years and started to believe it back when I weighed 335. Got bariatric surgery, lost 117 lbs and... guess what? the only thing that changed was my clothing size and picking up two new diagnoses directly related to the surgery. And to top it off I am still overweight and still get people saying that to me.
After 22 yrs I just politely say if they want to know why I can't...... they can just google CFS and check out the symptoms that my 7 doctors are helping me with.

On a positive note, just ran into a good person out there, at the DMV (Dept of motor vehicles) no less. Stood in line for about 5 min and got wobbly, ended up bruising my hand I was leaning on my cane so hard, got up to her window and she looked at my pin I wear that says "I'm running on empty due to ME/CFS" and had someone grab me a chair. Said her aunt has it and she was sorry I had to stand so long. Wow. I welled up and held back the tears.
It should not be just strangers who are supportive and kind...our families should be at the top of our list when we need help, support and love. I am so blessed that my husband, daughters and grandsons are all on my team. No one is ashamed to be out with me in a wheelchair or in the store with the little cart. thank you Goddess for them .....

I said to my therapist: "Who would want to live like I do, not able to do all the things I used to enjoy? gym, walking, riding horses and bikes, shopping, going to the beach?" No way, that this is all in my head. Why would I punish myself?

Well, it is in our heads, it's neurological, and yes, we feel worse than any other sick people and are more disabled. I've been like this, more and less, most all of my life. Long life. Thank G-d I married a good man and have good kids, all of whom help me out. My brother pays my meds! Good people. That I've given birth 4 times is my miracle.

I feel worse for the young who get this, their education suffers, and their love life. I had all that, and am so glad of it. Hopefully, there'll be a cure before I leave this world. I'd love to see it.

Thank you, Canigetwell, for sharing your feelings and your thoughts. I am sorry you do not get the support you deserve, but I find your insight helpful. Still, understanding why people hurt you doesnt really mitigate the pain they cause. I like what Lupin said, that the world will catch up one day.

I identify with Nina1959. I was anorexic in my younger years but I have become obese since I am became ill and can no longer exercise like I used to. Some days I cannot even walk around the yard. I, too, have had doctors tell me that losing weight would relieve my symptoms. I know it would help, but when I tried to explain exercise intolerance, I was told, Well, prisoners of war dont exercise, and they still lose weight. I also had a physical therapist tell me, Well of course you get tired and out of breath when you exercise. Everyone does. Thats the whole point. I do have an exercise program with gentle stretching and resistance bands that I can handle, but controlling my appetite is still a big challenge, especially on a bad day.

Canigetwell, I admire your determination to spend your energy on helping yourself rather than anger. Remember to be kind, gentle, and patient with yourself.

I just want to add that, it is almost hard for me to even read this discussion because I have been hurt so much the same way and FEEL VERY EMOTIONAL for others who have had to experience this.
All my life I've been given advice to "just do such and such to solve my problem " with many, serious situations--- I cannot describe the isolation and pain. I was a little worried when Richie said you should cut off your family, because I was always defensive if someone said just do something...da...da..But the family issue I think is the hardest. (by the way, I think Richie is very compassionate and smart, for the record,lol)
I severely limited my family at the age of 25. I am now 57. Many people have told me I was very brave and did the right thing---they wished they had done it sooner.
Overall, I was protected from a lot of "crazy making" . On the down side-- I never had family favours(of any type!) when I was in crisis--- it made for a lot of other stress and difficulty.
Thx for sharing your grief and congrats that you took some advice so graciously.
Our heart is with you.

I haven't had to deal with a lot of comments like that - I guess my neurological and weight loss symptoms make me "look sick." As if that is all that proves you are sick!!! But, when I first got really sick, I said those kinds of things to myself. I was my own worse enemy and pushed myself to do the things I had always been able to do. Needless to say, it only made things worse.

The "Why are you limping thing"...........I hear that ALL the time and I don't even know I'm doing it! Or why.

I think I can tell you why you limp, TG. ME/CFS causes muscle dysfunction...weakness and pain. When it's hitting me hard, it feels sometimes like I'm not likely to make it up the slight incline in my driveway while I'm trying to make it back to my house....literally not likely to make it.

I really lost it today trying to negotiate the steps leading to my workshop...wound up sailing off the steps and across a grassy area before I got my legs to catch up to the rest of me and I got my balance back.

I used to work a lot with ladders...I still have three of them. But now I'm terrified of ladder work...I never know when my legs or my grip are going to fail me. And forget balance...I have to hold onto something all the time when I'm up off the ground on a ladder or a stool.

I often advise people with ME/CFS to cut off family members who treat them abusively. That didn't originate with me...I learned it from reading articles in the CFIDS Chronicle. I went through a lot of pain with my family...until I finally realized that trying to reason with them was a lost cause. I no longer believe that any of us have an obligation to endure abuse. We're people, not human doormats...and we deserve to be respected. Being sick is not something we should be made to feel shame about.

I have a pic of a framed needlepoint someone made up...it shows a skeleton with the saying..."I only regret that I didn't tell more people to f*** off."

Richie - love the needlepoint - now that really made me laugh . Sorry about your fall - I hope you are ok . Thanks for your wise words, a gentleman indeed

That must be some needlepoint! I doubt I'll find the pattern in my Precious Moments Cross Stitch book. You kill me, Richie. Smiles to you.