Hi. I see you are new here. First of all, welcome! I hope you find some help for your loneliness here. I have. I had never considered an online forum either until I came to DS. I was really afraid to post the first time, but my post was met with so much encouragement and unconditional acceptance. I am really sorry your family doesn't understand your condition. On some previous posts, people mentioned videos and websites that are good for explaining your condition to family and friends. But, the straight up truth is that explaining the condition may not help a lot. This is a very misunderstood condition. You almost have to have suffered it to really understand it. It really does hurt when you can't talk about what you are experiencing. That's why this site was so great for me. I was in such despair and felt so alone. I didn't feel that I could talk to anyone about what was happening to me and how heartbroken I was over it, but I've found this group to be so loving. Sure, they can't be with me in person, but they are so "present" emotionally with me. I hope you find the same. We are so happy to have you. Many blessings.

You are not alone now that you have found this site. It is the best place to vent about all the symptoms that come with this illness and to get some great suggestions for dealing with the symptoms. Everyone here "gets it", they understand, and are very supportive. Welcome!

DafPel, have you had a diagnosis of Chronic Fatigue Syndrome, Fibromyalgia or Lyme? If not, I hope you get one soon so you'll know what you are dealing with.

If you have been diagnosed with Chronic Fatigue Syndrome or the new name, well, things got a lot better for me once I accepted it. I fought against it for a long time before acceptance, it's a process that we probably all went through. It takes a lot of energy, this fighting, so perhaps that is one reason acceptance is easier.

I've been where you are, I think, I was a single adult and wondered what had become of my life and how was I supposed to live now. I was very depressed and considered suicide. But that was 20 years ago and since then I've met and married my husband, travelled extensively....who knew?

Anyway, I don't know what your health situation is but these forums are a big help.

Good luck!

Welcome!! Happy to have you among us, my friend!!

Lonliness is a sad part of what we have to deal with because we have a chronic illness. Especially CFS! There are no outward signs. None at all. We look ok. We aren't especially nasty people, we're nice people. We want to help. We want to go places and do things that we cannot go and do anymore! People don't get that. They know us as healthy people in our past and can't imagine how such active people can take such a dive in their health as to be bed-bound or too tired to party! However, it is what it is. We have to try and explain. But only once.

I just tell people that I have a fatigue based illness that causes me to be bedridden often, and I cannot make plans because from one day to the next my energy level varies. I find this explanation is sufficient. I make it be sufficient. You musn't worry about what your family doesn't understand right now. Dafpel! They will see in time, that you are not making this up. That you WOULD be around, if you could be.

We all go through this. I'm glad you are here to hear our experiences and you will learn that this is a very safe place to discuss absolutely ANYTHING, and no one will say they don't "get it".

We get it. WELCOME!! xo

I'm sorry to hear you don't have understanding people around you DafPel, but its good that you have this support group. I too get lonely thinking about everyone out there living their lives, while I'm stuck at home feeling bad. I have come to acceptance about this condition. If I didn't. I would drive myself further into depression. I accept that this is how I feel right now. That doesn't mean I don't try to change it, but sometimes all I can do is lay down and accept. That doesn't mean I don't try to find answers and treatments. I guess what I'm saying is that I don't beat myself for being tired and feeling bad.

I get on this website or call friends/family. I find when I'm talking to those friends and family I don't talk about CFS or dwell on it. I try to find out how they are doing because it takes my mind off my own stuff.

This website is a wealth of understanding, kind. loving people.

Here's my two cents on acceptance, and it will repeat some of what hollie9 and blancorivergirl said. Fighting the illness is a no-win. You CAN'T push yourself to do what you want by willpower anymore. Your body is in control now, and if you respect and cooperate with that, you do a lot better.
Fighting the illness also takes a TON of energy, makes you feel worse and can drop you into deep depression, which is not only unhealthy, but dangerous. Trust me, I Know.

I find accepting that I have a chronic disease that 'makes my life different now', one that the vast majority of people never goes away, gives me a firmer footing. That said, I do not rule out the possibility of IMPROVING, of being able to do more, avoid crashing and just all-in-all have a better quality of life.

So I come here, where I have learned a lot, and try different things to see what works -- for me, pacing myself, staying within my energy envelope, resting as needed w/o shame or frustration, and being patient are all key. You'll *probably* have this all your life, but it absolutely can be better... and Better may not be Great, but it's still Better.

Welcome and please do check in with us as often as you like. I'm here a lot since I found it, and it's very comforting to have friends who KNOW what this really feels like.

Blessed Be, DafPel xo

A couple of thoughts that might prove helpful...

I do what Darla said...I explain things to family members as clearly as I can...but only once. If they persist in abusing me, or try to argue...I just ignore them. I'm way too sick and challenged in my circumstances to waste my energy playing mind games with fools.

Anybody else...associates, medical personnel, people who like to interrogate strangers about their medical issues...my health is not their business unless I choose to make it so. And I only do that if it's necessary in seeking help with medical issues. I learned the hard way that it's best to keep my mouth shut about my illness. Let them think I'm a drunk or a drug-user...I truly don't care anymore.

About acceptance...I predict you'll have to do it sooner...or later. Denial only works so far...after that things get really messy. So the sooner you come to terms with your illness, the sooner you'll start to cope with it rationally...and the better your situation will be.

I found the loneliness of coping with illness entirely on my own to be really difficult. I think I've got the hang of it now. It's a bad situation, but there's nothing I can do about that. People made conscious choices to abuse and ignore me, and I can't change that. It has to come from them.

It is a very lonely condition that's for sure. And it's very difficult for others to understand.

You have to learn to be your own best friend. Find things to keep you busy like hobbies or whatever.

My friends and family drifted away long ago. I just hit my 18th yr of being sick.

DafPel, this is a good forum for support and talking through things. Others here deal with friends and family and have some helpful tips and problem solving skills. So maybe you'll post again :-)

I joined, left, and rejoined this forum three times because I did not want to believe or have anything to do with cfs. I was afraid and hid my fatigue from everyone. I had cfs on my health records (without my knowledge), and when I found out, had it removed.

My family and one friend understand this, however one family member said to me a few weeks back, well, I get tired, too! That hurt. I thought he understood.

I still grieve not being able to travel freely. And I still have dreams about friends doing things I need to beg out on. But hang in there, because developing a good life worth living is possible xx