Saturday, October 8, 2011


This post is mostly for my old friends but others will chronic illness will probably relate ...

People who do not respond to messages are just plain rude as far as I am concerned. I am sick of being made to feel invisible. I AM NOT INVISIBLE, I am the same person I was before I got ill, if you no longer want to be a part of my life then delete me, don't keep me on your friends list and then ignore me when I message you ...

A couple of days ago I posted the above text on Facebook. I feel that I need to explain my motives because several people have been offended. For those who responded, thinking they had done something wrong, please accept my apologies. The person that this post was directed towards has not responded. Under normal circumstances I most likely would not have posted this kind rant and rave, however it's been a very difficult week, with the death of a friend and some other very unsettling things occurring in the ME/CFS community. I guess I've been feeling more alone and isolated than usual, and yes INVISIBLE. Since getting ill two years ago I have hardly had any contact with my previous healthy circle of friends. While I understand that people are busy and time just seems to pass by it's difficult being the one who gets left behind and forgotten about.

I don't want friends to go out of their way, and I don't need people to check in with me constantly or make a huge effort to see me frequently. What I would appreciate is just to be included in friends lives in a small way, a message on Facebook asking how I am or telling you what you've been up to recently, a text message to say you are in the area can you drop in and say hello for 5 minutes. Being isolated and alone for 2 years has made me feel as though I no longer have any value or worse or anything to offer anyone. But the truth of the matter is that I am still the same person I was before I became ill. My general interests have not changed, my sense of humour is still sharp as it ever was, yes my sense of style may have slipped somewhat but I blame that on age rather than illness, ha ha ha.

It recently came to my attention that the reason many people have not been in touch, other than the fact that they are just busy people, is that they feel uncomfortable, don't know what to say or how to act etc. I totally understand this, I haven't changed but I can't deny that things about me have changed, and I know that people have difficulty knowing how to react to change. I am at the stage now with my health where and able to communicate a little more and occasionally have short visits, maybe half an hour at a time. I’d like to invite anyone that’s been absent in recent times to reconnect with me. I'm happy to explain exactly what's going on with my health, or to not talk about it, whichever makes you more comfortable. I do hope some of you will take me up on my offer, please imagine for just a second how you would feel if your job, your social life, your ability to care for yourself and all your friends were to be taken away. IT SUCKS!! Many of those things I no longer have control over, but I can still be a friend!!

What a pathetic, sad and sorry sounding post that was! Hahaha. Oh well, better to get it out than keep it in. Anyway, so the gist of the thing is please get in touch, I'd like to pick up where we left off. I may not be able to come to your gatherings or events but I’d still love to hear about them!! Listening to what my friends are up to has got to be way more interesting than what complete strangers on Dr Phil are up to !!!


  1. well put lee lee. i hope that your friends feel reassured. as i truly believe for many it is a matter of not knowing what to do. but you have spelled it out - clearly. xx

  2. Yes, indeed. I can't count how many times I've reached out and asked if friends would just stop in for a cup of tea when they're in the neighborhood. I thought since they weren't reaching out to me I'd make the effort and reach out to them. But no.

    It may often be that they don't know what to do. Also they're busy with their own lives and we no longer travel in orbits that intersect theirs. But maybe the big thing is that one you point out here: us sick folks do make well folks uncomfortable.

    Those are reasons and not excuses. Once upon a time, visiting sick friends was just something one did, knowing that the kindness might someday be returned. What goes around comes around, and nothing is going around or coming around. People are not kind to one another in ways that were once basic.

    Ah well, at least one good thing about the changes in the world, is that we shut ins now have ways to hang out together, even if the rest of the world does forget us.

  3. Hey honey

    I feel you. If I could teleport, we could veg out in bad fashion gossiping about the idiots on Dr Phil.

    Don't feel guilty about being cranky for a minute, you have earned the right to feel whatever you feel. I actually think you're being particularly generous, but I am a hard ass.

    I think the answer lies in telling the truth, if someone feels uncomfortable or bad for you, or they don't know what to say - they should just say exactly that and it's easily resolved.

    Hope you get some visits.

    Big love
    Marzi xoxoxo

  4. Hiya,
    Lovely post (about bloody time :P not that I'm impatient ).

    It is hard to explain to people that we are actually lower maintenance friends than before. I won't force, trick or cajole people into staying longer, partying harder or walking further anymore (tehehe) in fact I will turf them out after 30mins and not let them back in for at least 2 weeks. Which means if I see four friends, I am all set for a couple of months. Low maintenance! (although I will stalk them a bit on facebook in the meantime).

    THat gives them and me plenty of time to think of things to say for the next 30min visit. Everynow and again I get a bit teary (embarrassing) but it passes and that's what visits are for...distracting me so I have someone else to think about (err live through).

    Friends that understand this are like gold. Which reminds me I need to go shoot up with some b12 before my 'golden friends' arrive (very excited face).

    I guess Lee Lee, its cliche but true, you really do find out who your true friends are in times like these.

    Come on guys, you can do 5,10, 30 minutes every now and again.

    xx Glad you are feeling a bit better/stable sick

  5. Great post and brave (as usual).

  6. I think the flights from Berlin to Australia are going cheap. And I will soon be homeless! I read between the lines and I see what you are asking: full-time roommate needed. Here I come! :)

  7. Many virtual hugs to you Lee, all the way from Blighty. Keep going, and remember those who mind don't matter and those who matter don't mind.

    Shel x

  8. I love that you are giving your friends and opportunity and some guidlines...I hope they take you up on it. It's hard enough being sick, let alone loosing friends to boot. I've lost quite a few along the way and I think you hit the nail on the head when you say that this illness makes people uncomfortable (I have heard this is true with other diseases as well).

  9. Hey there, stumbled across your blog and despite having a bad day of it today and only just managing to read the whole post, go you lovely! I think youve just said what most of us want to say every day and I look forward to reading some more. Carry on those rants!! x

  10. apologies for the anonymous part, its the only way it let me post, I aint the cleverest with technology! x

  11. Thanks guys ... it's great to have some positive feedback from people who understand. x

  12. Hi Lee Lee,
    I've been reading your amusing posts for a while now. This one really hit home, though. I understand what you're feeling and admire your honesty. I completely understand your anger as I've had similar experiences in my life. True friends are hard to find, and you won't know how true they are until tested. I've had people tell me, years later, that they didn't know what to say. Living with anger and resentment is not good for us and makes me feel worse, as you know. In the end, true friends do return, and it is so easy to forgive them...
    Hugs from Montreal,

  13. Everyone with this illness feels lonely and isolated. I have children and am married but I still feel lonely, just because essentially nobody understands how ill I am.
    I am pinning hope on Rituximab or something similar and am praying for a healthier future. If we ever recover from this, we will be amongst some of the most understanding and compassionate people on the planet and because of this, we will go on to make many new friends.
    Keep going Lee Lee, keep on keeping on and one day we will all get there, I just know we will x