In my case, I have found that I am the one that is withdrawing, not so much my friends. I am sure that if I called one of them up and asked for something, they would help me. People know that I have a helper in my husband and don't really feel that I need them. I don't express to them that I need them. This is a mistake. The real world is still out there, like all the people in my church. If I really needed them, they would respond.
I realize that I can't go anywhere or do much, so I have retreated. I can't blame my friends for this. If I put myself "out there" a little more I would be doing myself a service.
The honest truth is, I'm too tired and too sick and I don't want a lot of people in my life right now. I can't handle it. My husband and my daughter are my life and that's all I can deal with right now.
I'm sure there are people, even family members, that have disappeared on us without warning, and I find that to be unkind. In your case people may have just stopped caring, or so it appears. In my case, it is a choice that I have made because I can't cope.
Either way, I believe if we really need people, they will come.
Blessings to you Michelle, love Darla

I think at least in my case that people don't really understand how devasting this illness can be and just sort of drift away. Like Darla I have withdrawn from people becaue am just too sick and am tired of trying to explain this illness to people. Its just too hard to face the possible rejection also. And I have had to deal with rejection especially with my family. I no longer put myself out there to be hurt anymore.That is probably a mistake on my part but my house is too messy to invite friends in anyway. lol good luck dear marilyn

Sounds like they don't understand what you are dealing with. I am guessing that it is because this illness of ours is such an invisible illness. We don't look sick. We don't sound sick. It is not a terminal illness. If these people are truly friends of yours, they will come around. Have you tried sharing pamphets from the CFIDS Association (www.CFIDS.org) to explain your condition? Some people are not capable or willing to be true friends or maybe you caught them at a time when there was too much going on in their life. Good luck with your friends.

Hi Michelle ..

I have the SAME problem. People act all concerned, but the truth is, because I don't LOOK ill no one treats me as if I am. Weird world .... but we knew that didn't we?

A neighbor moved here about 4 mos. ago. Nice woman. Wife, mother. 52. Aware of illnesses, emotions, & so forth. She wants me to go w/ her tomorrow to pick up something she ordered. In Lancaster. I used to live there. Would be nice to visit old neighbors. A lovely Amish family. I love them. We write. They don't have a phone. Typical, 31 grandchildren, 20 great granchildren. Ben & Anna. Ben used to bring his horse up the hill carrying a fell tree that he'd cut up for me for my woodstove. I loved having them as friends. Never demanding. Always refreshing b/c it was plain and simple. The woman here, Peyton, is someone it would be nice to know, someone it might be helpful to know b/c she's local. Thing is as much as she would be nice to know? As much as it might be helpful b/c she lives so close? With CFIDS, to have local friends is more energy than I have. Especially new friends. After years, which is different if you've 'only' had the illness for one and a half yrs., it's easier to do things alone. In the end, for me -- and it's not this way for everyone -- having non-CFIDS friends has become a world I hardly frequent. I believe it takes years to develop the ways you're going to manage your friendships. Great topic. Thx.

For me I have had a lot of hurt with friends pulling away because they are just as scared(in a different way) as I am in this weird illness. I have a couple of friends around me who have been ill a lot longer than I have and it has been so helpful for me to get to know them better. They are so dear to my heart. My friends who are healthy I have had to come to terms with the fact that there are certain things that they might not understand about my life which I am OK with now. I had to tell them all at one point OK now I am going to talk but I don't need any advice which really helped out. Because people want to fix me so bad, that is why they make bad suggestions like loose weight or exercise:). Its all because they haven't walked in our shoes. So if I just tell them what I want them to hear rather than keep them guessing it has helped me a lot. Friendships/relationships are a lot of effort but are worth it to me because I don't do well when I don't have people in my life. I have found that when I shut everyone out (which I did all summer long) that I was more sick, in more pain and more depressed. So I hope this is helpful for someone and if not then thanks for letting me share!

~Jsuz

Nomemory, I can really relate to what you are saying. I live in L.A and most of my close friends have moved to the beach. I couldn't handle it if they were here. Sometimes even my husband takes a lot out of me for no other reason than I have to talk to him! I really wouldn't know if my friend's would be there for me or not because I haven't asked them to be.

So for those of you that live alone, do you have any interaction other than online? I'm having difficulty adjusting to the isolation.

I live alone, I have very scant ineraction with anyone, I didnt realise how bad it was until recently, when I needed help after surgery, nobody was there! I spent a few days with my sister but, havent really heard from her since. That was 2 months ago now.

Same thing here. That and leaving a high paying, even higher stress job. What hurts the most is a TRUE friend would stand behind you and never leave you over something like this.

Hi Michelle,

I still have #4 at home, but between his friends, his school, his job, and being a senior (going bonkers) I see him very little. We don't even eat together. I have a friend who takes me to the doctor's and on Thursday mornings, if I have the energy, I knit with a group of women. Otherwise my life is pretty much online.

Friends are a hard lot with this disease. I have lost many because of their inability to deal. People are selfish or they don't want something negative poisoning their easy lifestyle. I feel like an ink stain that really bugs someone. Even CFS friends can be difficult because we are all so different with so many different variables and symptoms. I haven't kept in touch with every CFS person I know. Especially those that don't help themselves or try to make their world better. That in itself can drain me. You have to "try" and find those that are understanding and have different friends for different occasions, so to speak. When you are at your worst it is hardest and unfortunately, that is when you need friends the most.

Ironic, isn't it?? Good word choice, Holly. Toxic. Here we are ... internally toxic yet treated as EXTERNALLY toxic by the "well." The Worried Well.

Bleh.

Jesus had followers (friends) too, until things got ruff.