I'm sorry you have to feel that way. Unfortunately it's that way for many with Lyme, but that doesn't make it easier for you. I don't understand it either since I'm also one that would reach out to help others. I did a lot of that in the care home my mom was in, helping the other residents or helping the aides with something. That's why I'm doing worse now, but that's ok. I wouldn't change anything I did. How about you moving up here and I'll help you. ;) I don't think you'd like living around a large city, though. I wish I could talk you your friends and tell them how much you need them.

Did you hear about the guy who is canoeing from Medford to Vancouver WA to raise awareness of Lyme and bring in money to help the cause? It's raining a lot here and it's cold out, so I hope it's better down your way. Hopefully he'll have a sunny day or 2. I just thought that might interest you.

Just keep hanging in there lady. We're here for you to lean on any time, as I'm pretty sure you're aware of.

"Sadly I think people don't know what to say or how to act around people who are ill so they say nothing instead. Being sick is very lonely. It adds to the depression that we already suffer. I've thought the exact same thing you posted. I'm a much better friend than my friends are. "

I feel the same way as JR. When my grandfather was dying from cancer, I visited him for a month but I wasn't really "there". I would go outside or spend more time with my other family members. I couldn't stand his suffering and I didn't know how to help him. I took him to the dr., got the meds, but couldn't be emotionally there for him. I just didn't know how. Then when I got sick, after he died, I realized how lonely he felt, with all of us around but no one really there for him.

My own sickness made me a better person because now I am a new person and know how to make others feel better, including taking better care of my sick children. I think what makes things worse is the fact that Lyme is stigmatized and some people just listen to CDC and thing we are crazy :( A double wammy.

Be thankful for your guy and your brother because things would have been harsh without even them around, and don't expect them to understand everything, either. People that haven't dealt with this, are limited in their understanding and is not a sign of unwilling as much as it is a sign of unknowing. I loved my grandfather more than anything in the world and I was in my 30s when he died. I wasn't a kid that didn't know any better :(

Hi IHL, your post really resonates with me too :-(. I had four close friends who I really thought would be there for me, but really, after the first couple of months, they drifted away and lost interest and now I never hear from them. My husband and family have been amazing, and I rely on them completely, but sometimes I just need a friend to chat to or get some support from. I don't think people realise the value of just a simple text, just to say hi, how are you doing, I'm thinking of you. It only takes a minute :-/.

Around a year ago, A couple of them asked me to join them on a long day out, involving a three hour round trip, shopping, lunch, meeting another friend . . . I said that sadly I didn't feel up to it - and I never heard from them again! Not even to ask how I was actually feeling to make me feel not up to it, if you see what I mean. Think they felt I'd snubbed them or something, and didn't bother to contact me again! I think they think I'm better by now and should contact them or something, but they don't seem to realise how low my confidence and motivation is . . . I need THEM to contact ME.

I do agree with the comments here though about how people DO care, but just don't know how to act around someone who is chronically ill. I definitely need new friends though :-(. No chance of that at the moment, but hopefully in the future.

As I've said before, I wish this forum was less virtual and more actual, and we could all get together and chat and vent and help out and just support each other, as our actual, real life friends really should be doing. I'm so glad to know all of you though, in whatever form, so thanks for YOUR friendship and support xx

"My relatives seemed to feel snubbed . . . I think they like to assume that I'm well now, so that can ease their conscience and they can continue to feel I'm the one at fault. I've finally realised that I don't need negative people in my life"
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Celeste: Yes, I think you've summed up my own situation perfectly there. And I've also decided I don't need negative people, so try not to waste my precious energy worrying about it now. (PS I send a lot of hugs across the ocean too . . . are you in the UK as well?)

And IHL, I really wish I lived closer to you so I could be of some help, but hope you're feeling the love from here in the UK! xx

I think we'll all know how to be good/better friends once we are well....

Even now I need to call my friend whose husband has cancer....man, what a learning experience this is on so many levels...

Hang in there IHL!