Losing Friends

Dear Jackie, I feel your pain. Although I'm only 44, my life is heading to this extreme. I too have friends that I have had to cancel so many times for so long. They do not call or invite me anywhere anymore. It's rare I even get texts without initiating the conversations. You have asked a great question, and I'm sorry I don't have the answer. I too am searching for it. The only thing I do when feeling low or alone is get on a support group chat such as this. I'm so sorry you are housebound. That must be very hard! I want you to know I understand, as most of us do. We are your friends! If you ever want or need to chat, I'd be glad to talk with you. People chose to ignore what they do not understand or what they can not relate to. It's not their fault. YOU ARE LOVED! DON'T EVER FORGET THAT

Hi, Jackie-

I'm really glad you reached out to this group.  I don't reply or post much, but I want to tell you this...you are so helpful and responsive and supportive to the people who post here.  When I read replies to posts, 90% of the time I see something supportive you've written.  You make a huge contribution, and you make a real difference.  I feel like you're a friend I've never met.  Since I read your post of how you make the best of your situation, what you do to get through your days, I think of it often, and it inspires me in the really difficult moments, of which I have many.

That said, I'm deeply sorry for the loss you're feeling.  I think it's a tragedy your friend of over 50 years is unresponsive.  I wish I could say don't take it personally, but I would expect much more from a friend like that.  Honestly, I know I've disappointed a lot of people when I had to cancel (or not make) plans.  People have written me off, and I've let go of friends, too.  It takes a really special person to hang in there with you, and your long-time friend is maybe not that kind.

I know that no one understands what our lives are like.  I am not housebound to the degree you are, but it's fair to say I am about half the week.  The isolation can feel unbearable.  I just broke up with a boyfriend who had a difficult personality, but I was willing to stay with him for the companionship and the distraction.  I am so very glad your husband remains loyal and a good partner.  Thank the heavens for that.

I think the place to find friends are these forums, given that your form of communication is e-mail and writing.  I think it can be therapeutic to write to your friends who you feel have abandoned you and tell them how you feel (about feeling abandoned!) even if it's just to have closure.  I ended a friendship just a few days ago because she didn't like me setting boundaries around our talk times.

As a therapist of mine said, it's scary to be sick and alone.  I would say it's horrific.  Keep the communication going with your dear husband (I loved the concerts at home, btw), keep writing letters to the editor/paper, and know that we in this forum are grateful for YOU and all you contribute.

As a final note, whether you're a spiritual person or not, there's a book called Tall In Spirit by Joni Woefel.  She writes very skillfully and poetically about living with chronic illness.  I read it years ago.  

Know that you are not alone in living with this, and we support you in the virutal world.

Nan

U have all of us u r not alone we are all here to chat I only have one friend now that comes to see me when I car t get out we r in contact everyday I think some people find it maybe difficult to understand what we are going through and it is tuff to get your head round especially for us but if they was true friends they would be there and times like this u find out who your friends really are xx

l think society generally is becoming more divided, including familes, far more so than when l grew up where families lived near and were close, and neighbours all knowing each other and having regular contact, popping in to neighbours for coffee and a chat, socialising together, much of that in decline, Some are lucky and have big supportive family, many are not. Means people have to be proactive in socialising in finding or keeping friend,s, but difficult to be proactive when health problems make it so difficult, . l found even before my symptoms got as bad as now, which is virtually housebound, just occassional short trip out on good days by car, your expected to be reliable,even if you explain up front, and let them know you cant make it, and feel bad about it your still criticised, put down,  and many are cynical about the effects of others health probs, more so when such as cfs,fibro,i.c, any health  probs that dont have high profile labels and empathy support response they can bring, often even medics arent empathetic when in the know. Personally l feel my world has shrunk, some dont visit or keep in touch, and more now with their own restricting health probs, it can be very isolating, my best friend had to go in a home a distance away so  l  can go days without seeing anyone to speak to, often its taxi drivers l speak most to, or delivery men. lve a son a distance away,  another bit nearer, but busy busy. l also think quite a lot of people find it it difficult to deal with others health probs, even family, maybe worry, or selfishness. For me, like many l guess, the net is good for emails and support groups, lve also a little dog and 2 cats, sometimes a worry as l cant walk the dog, luckily have big garden for her to wander round, and she is a small dog, they are a comfort and company, make you smile laugh, motivate you. l look in on fbook occasionally, a cousin posts often, she,s healthy fit, her lovely attractive devoted also fit, both retired few year back, well off, now in goa for few months as yearly event, go to oz in autumn this year, others simular, pics accompanying, exotic places beach bbq, etc all looking fab, omg, can only take so much. But also live in hope, medical advances,spontaneous improvement, also reading about others with simular, or worse, and some very young, makes it harder, but time is on their side for cure to be found, Nanette, odd you saying that about boyfriend, my son has severe diabetes, and thats not as easy as many think, they can be more active, but can also be quite ill often, worry for me, and he,s just got back with an ex who he lived with several years, and her daughter who he brought up and loved, then a bad split up, affcted him badly she a bit of a user and taker, he,s a good job wage, and gave her a very good life, he explained, bless him, after 2yrs on his own, he,s doesnt drink and socialise much, so even with work his loneliness was too much, so for him also its companionship.

Can tell l dont get out much, and ramble on with any opportunity, l,m sorry Jackie that old friends have let  you down, but know it does happen with others, and its not down to you, l dont know why people have become like that, l think maybe one day it will happen to them and then theyll understand. Just posting your thoughts as helped me and others l guess knowing theyre not alone in experiences, so posting is a posative, and of worth. Hope you feel a bit better soon. 

 

Hi Jackie I understand completely what your going through. I'm 32 years old and it's my 3rd year with m.e I'm housebound and if I go out to any appointments which is only every couple of months I have to use a wheelchair. Not one family member comes to see me, they don't text to see how I am. I have only one friend that messages me but because I have nothing new to say the conversation ends pretty quickly, She has made new friends and goes out and I feel left behind alone in my bedroom. It's so hard on us this illness and it's very lonely and isolating. You have a lovely husband and I am blessed with an amazing partner and son so were luvky we have them. It's just so sad that others don't understand after all were very ill take care xx

Hi Jackie. A friendly "hello" from Liz in Nottingham, UK. I know just how it can be and feel for you. I keep myself "occupied" with reading and listening to music when i feel really weak and tired. I am not too bad at the moment, able to get out and about, but iI have had really bad times and I know how it feels. I wish you well, and try to remember - you are loved!

Jackie

I think that many of hus have been down the same road as you in regard to he isolation that ME brings to us. If anything, having a condition like this teaches a great deal about relationships and friendships and just how many of those have any real substance.

Having said that I can well believe that it's not an easy condition for others to understand, symapthise with or have any empathy for and many just can't be bothered....

The emotional isolation to me is so hard to deal with. I miss relationships, the caring, the laughs, the fun times. I'm not naturally a miserable person but it's not that easy having a laugh on your own, especially on a bad day and sometimes I don't see anyone else for days and days. I just go and sit on the quay here at times, just to be able to talk to passers by....

I've no brilliant suggestions as to how to deal with it, I'm just as lonely with this condition myself, so if you come across the answer, give me a shout ! ...  In the meantime, there's always us lot to have a moan with...