Sorry to hear that your friend is not being supportive. I know that is really hurtful. You said you thought she understood, so maybe she was having a bad day? Did you tell her the comment was hurtful?

I do think a lot of people just don't "get it", but I don't think it is unreasonable to think our friends will try to understand. I've learned over time that I have to let so many thing go, because to get upset is so detrimental to my health and well being. It is sad, but that is why our little group here is so important.

I hope your friend will be more supportive, and if not, that you will be able to not let it bother you!

I am sorry you had this experience with your friend.

In my opinion how you deal with it depends on how important this friend is to you. If I experience this kind of thing from someone important to me I will try to educate them a little through explanation or give them some literature to read in their own time. If they are an acquaintance/ colleague then I don't see the point. I rarely speak out at the time it actually happens, I will go away, think about how I am going to tackle the situation.

My own grown up daughter does not get what my limitations are, even though she still lives at home. She gives off the impression that she believes a lot of it is in my mind and I have major depression and believes if I just tried harder and pushed through it that I could do a lot more than I do at present. It really hurts sometimes but I try to bear in mind that she is still quite young, has never personally experienced much illness or pain. I try to educate with little articles here and there. She is a hugely important part of my life so I will make the effort, bite my tongue at times and hope that she develops some more compassion and understanding as she matures.

My ex husband is much the same and preaches a use it or lose it method. He really believes when he talks to me he is using a motivational/ inspirational tone but it is more a condescending attitude in all honesty. I stay silent and don't respond in a good way or bad. What he thinks and believes is in no way important to me, I don't see why my health is any of his business so I don't even try to educate him on my illnesses. Why should I let his opinion cause me stress, that in turn would be detrimental to me physically.

I hope you find a way to address this issue if that is what you decide to do.

Jen

I can't tell you how many friends call me lazy. Last week I finally snapped at one of the most frequent offenders and yelled "YOU CANNOT SAY THAT TO SOMEONE WITH CHRONIC FATIGUE SYNDROME!"

Honestly I think it worked. Make them feel like they said something truly socially unacceptable and maybe with a little time their shame will turn into enlightenment.

Some people just don't get it even if they are very close to you. I have two sisters, one has cfs and fibro. The other sister is clueless about cfs. And my mother gets angry at me when I get really sick. I developed long term relationship while having cfs which ended when I got very ill in 2009. We spent 8 years together. My healthy sister saw me when I was unable to walk or speak and she still asks how do I know I have cfs or anything. However, having gone through that period of serious disability made my illness more credible to people at work and some friends. Before that no one understood what I had and I was ashamed to talk about it. Now I am open about it, try to educate those who are willing to listen, and I don't care about those people who are unwilling to listen or understand. It seems like you should have a serious talk with your friend.

Luna,

I can't believe you took the bus! You are an incredibly brave and determined person!

I wish your friend had said that to you instead because that is the appropriate response. I hope you can take comfort in knowing that at least there ARE many of us who know what a difficult task that was, and admire you for finding a way to reach a goal. You should be applauded.

It takes time for others to figure it out, and some never do.

Good for you!

Unfortunately this has become a common occurrence for me as well. It just made my heart sting a little reading your post because I know how much it hurts. I have lost most friends because I couldn't keep plans and now the comments are from family. I've cried so many tears over people's careless words.

But, as I try to gather strength, I realize that no one truly could comprehend what this is like unless they've experienced it. That's what makes groups like this so nice.

I agree, you were way brave to take the bus.

Als382, I applaud you! If someone calls a person with cfs lazy, they deserve to be snapped at.

Luna if you haven't already, I hope you set your friend straight. I will throw you some possibile things to say:

I am not lazy.
It is amazing I took the bus, because a lot of people with cfs can't. It is amazing I can walk too and from the bus stop.
There is nothing lazy about refusing to risk collapse.
Have you forgotten I have chronic fatigue syndrome?
It isn't called chronic excess energy syndrome.
Not being able to walk long distances is a symptom of cfs.
I'm only as lazy for not walking to your house with cfs as you are lazy for not walking 50 miles per day while healthy.
I don't see you as a cruel person so I think we need to have a talk about what chronic fatigue syndrome is.
That is not true and it hurts my feelings a lot you would say that.
If that is supposed to be a joke it isn't funny.

Without naming names you can talk to other people in your life about this. Tell them that a friend of yours thought you were lazy because she didn't understand that cfs limits what you are able to do. And then you can ask if they feel that way too. This is uncomfortable, but not as bad as wondering if everyone thinks your lazy. If they have that impression you can correct it. You could skip the asking part and just explain why you are not lazy and can't help being limited.

I can't take the bus. I wouldn't be able to walk back up the hill on the way home. It's great you can!

It's funny in a way, how hard it is for people to walk in other's shoes. You gotta laugh at how dumb she was. And answer her, that you're so surprised that she doesn't "get it".

I've lost friends who don't want to deal with my illness, my limitations, my grief. It's very good to find new friends, more understanding. I wish you luck and healing.

Tell her, for me, she wouldn't say that if you had cancer, or diabetes, or heart problems, all unseen.

My standard reply for folks who don't get it is something they are likely to understand because it gives them a frame of reference from their own experiences.

I say that about 90% of the time I feel how they feel when they have a bad case of the flu. Then I ask if they could do the thing they are asking me to do if they had the flu? Or would they be in bed, resting?

Oh and "good" friends don't call you lazy no matter what.