I don’t think this group is too active anymore. It looks like it started up about two years ago and then, like so many other good ideas, it lost steam.
Why is that?
Did it lose it’s main people or was the initiative lost?
I’m trying to start up a live Support Group for individuals with Chronic Invisible Disabilities in Ithaca, NY but I realize it’s going to depend on me. I have support from the local center for people with disabilities as far as space and advertising, etc but I can see I’ll have to be the one keeping it afloat.
There is a DEPRESSION SUPPORT GROUP which sounds brilliant but it only consists of three individuals: all men. How is this helpful to women? I’ve dropped in a couple times over a two year period and it’s the same three guys. why is that? Aren’t women depressed and in need of a support group? Good grief!
Of course, one reason behind any group is for the social aspect. To get out and see your friends…or just to get out. Sometimes when you can’t even really talk.
There are two other groups I’ve tried: RA Support group and , yes….over a four year period ….the same women : it never seems to change. It’s like a private social group. And there is a Chronic Illness Groupaffiliated with the Unitarian Church and it’s also the same…lno outsiders except for me. They don’t even exchange contact information.

Lucky for me, I like my company, and my cat’s company, so the fact that we don’t have humans show up doesn’t hurt our feelings. Since I don’t drive, either, and can’t afford to keep up with what “everyone” is doing, it adds other layers to this, and the internet is a major factor in keeping life real, otherwise I’d probably feel like Walter Mitty or Oblomov. I’ve also learned how to do regular household shopping online so when I do need to have assistance, I don’t need to get the heaviest, most unwieldy stuff. Epilepsy isn’t often deadly, and idk if being ready for a nap after taking morning meds and all these other pains are meaningful or a sign of age/boredom/something I ought to know about. I thought, though, maybe it was just me sitting here being a 21st century hermit. Looks like not so much…

I have felt isolated even in the presence of people because they don’t (don’t want to) understand. I recently drove to Myrtle Beach, SC which is a big trip for me. I had been feeling better then I had been in a while because of the antigen therapies for bacteria and viruses that I have been taking and since I am usually very isolated, I made the trip to meet a friend and to socialize with a new group of people. I had told everyone that this was progress for me and that I was disabled and that I battle a serious immune disorder. I told everyone that I spend a great time lying in bed but that getting away was good for me. I had said that I had nearly lost my life from infection a few times. Actually this was an astrology conference that I had been attending. I have always been interested in astrology, not tabloid of magazine astrology which is usually nonsense. I attended a workshop at this conference where everybody studied each other’s charts and we were all asked to talk about our lives. My life Involved disabling sickness and not much else for many many years so I said so. AT the end of the workshop the professional astrologer thanked everyone for having the patience to listen to me! Gee thanks! I thought that we were supposed to talk about our lives and this has been my life. Then this same person asked me if I work. What part of “I am disabled” didn’t she get? Driving home my car broke down, and I was stuck in a motel room while it was being fixed for an additional 3 days. By the time I came home, I had an upper respiratory infection and two weeks into it, it got worse, not better. This is what happens to me. I had shot photos of everyone at the conference, photos that I would send to everyone. I contacted a person and said that I was sick and I couldn’t send them until I was better because I needed to go to a friend to get help cropping them. This person then said, “I hope that it doesn’t take a year for you to send them to us, Grace”. People just do not understand I am isolated among them. Sometimes I just prefer to be alone. Yes, it is true that it is difficult for people to listen to you talk about your health constantly and when I socialize, I try to have fun. I love to cook and I love nature and the outdoors. I do not talk about sickness all of the time but what about when people ask you to describe your life? you are asked to describe your life? , If I am asked, I will tell th and I will hope that people will have the heart to understand that not everything in life is pretty andthat they will respect me for what I have had to face have a good opinion of me for battling a disabling condition with strength and courage. If they do not, do I need them in my life?

I’d like to thank you for your efforts to offer your readers with these interesting and helpful information. I found your article and found it so important to everyone seeking up-to-date data about smart phones and their accessories. So, many thanks and wish to read more posts in the future.

It’s hard to know where to start. I have been alone forever it seems. I had a childhood brain injury. I have fought and fought to appear normal. other than a limp and something a little off about my posture people haven’t got a clue what I deal with. I’m just not normal though.

I’ve got to a stage where I just don’t see the point in socializing anymore. I really accept that people have the right to judge others however they what to. I think to others I just look lazy and like someone who has lost their “spirit”. I hate having to justify my situation to others because my whole life has been destroyed ultimately and my disability is the main theme within my life if someone wants to get to know the real me, ie why I do so little and consciously slow.

being almost forty and living the last 15 alone and pretty isolated because of finacial restrains plus not having the mental strength to be extraverted, due to mainly the disability, has been overwhelming beyond belief. I don’t know what the solution is. I personally think disability and insecurity almost go hand in hand for alot of people so socializing isn’t as fulfilling for me as it is for normals.

I gather disability makes alot of us introverts. How do introverts overcome loneliness? It just seems like a vicious cycle that is just loneliness that snowballs, and ten years trying to get some emotional boost out of the internet hasn’t really worked. Maybe this is just making excuses for some reason or other but I think society has to do better in fostering an environment which is more accepting of disability.

The disabled are essentially considered a burden to the current social construct and our abnormalities almost highlight this. On the one hand you have these people that think you need to try harder to be functionally normal, even with a disability, and on the other hand you have people that have the best of intentions but want to “help” fix you.

I am permanently disabled. Just as we can’t change the colour of our skin, a permenantly disabled person can not be “normal” in terms of the society they live in. The only possibly real solution to isolation is acceptance of who we are by others or to somehow learn to be happy in our isolation.

In this increasingly secular “pentacostal” world, which says we can be healed if we only believe and be super positive, there is very little room for acceptance of the permanantly and significantly debilitated disabled.

The worst of all this is that even if I ever was to be able to find someone that I would really like to share my life with, it would mean destroying their life financially as the government would remove it’s support for me if I was in a “normal” relationship. How on earth could I essentially ask someone “do you mind being legally discriminated against by your government for being in a relationship with a disabled person?” If governments are essentially discriminating against the disabled still, of course their citizens will too. I just see little point in trying to overcome this isolation. Being in a social situation and being subtly rejected, but “smiling” and playing the part, is I think worse than being alone. sorry for being so real/negitive but I am so over this isolation.

What advice do you have for those of us who live alone & remotely from friends & family(who still care about us) only have enough energy for survival,  none left for socialising, not even online?

I wish there were a real life support group for my illness (pernicious anemia) in my area there is one in the UK. I think it is difficult because PA is more rare than some other AI diseases – online support group is fantastic though and has been beyond helpful in making me feel less isolated 🙂

Wow…I haven’t been back to this article in a couple of months. I’m so happy to see all the input. Your suggestions and point/counterpoints are wonderful. Thank you for all your kind comments and for adding to the topic. God bless all of you.

Facebook absolutely has helped me keep my sanity through this 3 month bout of shingles, post herpetic neuralgia, and trigeminal neuralgia, in addition to the severe asthma and fibromyalgia. I’m still trying to wrap my head around the idea that this is my new “normal”. I’m grieving for what was my life. Mostly been confined to the couch/bed because of the pain, so a trip to the grocery store is really an event. Am definitely sick of my health being the topic of conversation–but I panic if I’m too far from home and worry about a real flare up of the pain–usually only helped with pain meds, anti-seizure med and lying down. Bless my boss for keeping my job open this long–I’m trying to return to work 2 1/2 hours a day, and hope to slowly bump that up to at least 4 1/2 or 5, but don’t know how realistic that is. I have just 1 or 2 friends and relatives who really ask and care about what I’m dealing with, and when they start asking, I start crying–it’s so wonderful to have real life support and kindness in addition to Facebook.

Gail,
Your advice about not making morning appointments is something I plan to start doing! Just this past week, I got up at 8am to try to make a 9:45am appointment and just had to call their office and cancel because there was just no way I was going to make it! I get so sick and tired of being sick and tired all the time! Getting myself up and ready to leave the house is probably one of my biggest obstacles. I use up half or more of my days’ supply of spoons doing it.
I enjoy the internet most days and facebook helps me keep up with some friends. I love to read but chronic dry eyes do not allow me to read for hours on end like I used to. My house is a wreck but some days I pick out a 3 foot section of a room and make it my days work to get it clean and spotless! That way, I can gain that feeling of accomplishment in a job well done instead of despairing about what a mess the whole place is.
I participate in my local church and that gives me a good way to focus on others instead of myself. Sometimes trying to do things for others takes my mind off of my own ailments, even if it is only for a short while. I play piano so on days I feel like sitting on the bench I spend time playing only what I enjoy, not what someone else wants to hear. Takes my mind off of the chronic pain that comes with each new day. Music soothes the soul so even if you do not play an instrument, just listening to the music you love can be very therapeutic! Just a few of my things that help me make it through rough days. Thanks!

I am glad to read an article on isolation as it’s all I do.

Fortunately, I am blessed to have good physical health save a couple of chronic conditions that are controlled. My mental health is what imprisons me. Right now is a very bad time and has been since November of 2009. My Dad died end of August 2010 and all friendships went except for one. This friend lives out of state. Oh, and I do have a friend here but find it hard to be real with her.

How I cope is to volunteer (although have had to cut it down to one day per week) and live on the Internet. Sleep is my greatest relief. Mental health issues can be a real challenge.

Having trouble relating to some of you because I’ve been at this battle with RA and FM for thirty-two years, and after taking care of children (now grown), a husband (now deceased), a mother with long-term cancer (now deceased), and a father with Alzheimer (lived with me for four years and went into a home a few months ago), I love the time to myself to lick my wounds, so to speak. Not to say, there wasn’t tremendous grief with the loss of my loved ones. It’s difficult enough for me to make it to my monthly neighborhood luncheon at a local restaurant even though I love my neighbors, I DON’T MAKE MORNING APPOINTMENTS. And I’ve let my housekeeper and exterminator go because having people come to the house is such a chore, I never know if I will be able to get dressed that day, (more than likely, not). It’s embarassing. Thank goodness for FB, Email, texting, the Internet, T.V., Kindle, and DVD’s, my day is full. Full of pain, also, but full. I constantly think of the sick and isolated widows from a hundred years ago that had nothing but an oil lamp and well-worn books to read. I’m sure they went nuts.

I suspect many of you with chronic pain are younger than me, and I do remember that struggle with loosing normalcy and a social life. I guess I’ve finally surrendered to the disability at 66. Healthy people do not understand my life, never will, and I have given up trying to enlighten. I’m fortunate to live in a beautiful environment with squirrels and deer as daily visitors. Lucky me, I am blessed. Alone at last, alone at last, thank God Almighty I’m alone at last!

I will say, though, I am elated with finding this website (you are ‘My People’, LOL) and am enjoying all the daily postings. I will pray for you all.

Great article! I know this isolation all too well, because nerve damage in my face limits me from going out a lot of times… wind, cold, rain… they all cause intense pain for me, so I spend a lot of time at home. One of the things I do to help keep my sanity is to help run a support group for chronic pain… and we try and make sure to talk about all aspects of our life, not just our pain. It makes us feel like our own little online family, and that helps us feel not so alone in the world. Yahoo has some wonderful groups to choose from!

For me as much as I love support groups sometimes I just wanted to feel normal. I found a site imvu.com where people can chat one on one. You have to accept a chat invite and can look people up by interests or location. You can talk about whatever you want and don’t have to bring up being sick unless you want to. I actually found my husband there by looking up similar interests, after talking for a couple of weeks I told him about being sick and he was fine with it. That was just over 2 years ago now.

Also if you have a hobby you love try to keep up with it or at least find a site you like and follow it. Knitting and reading about it helped keep me sane.

I have a few to offer:

1) Crafting: I crochet, decoupage, make jewelry, sketch, and all other sources of creative outlets.

2) The worse I feel, the more I try to help someone else smile. On FB and in these boards, I seek out those having bad days and try to say something nice. Sometimes the words sink in and help me to feel better emotionally. Or I crochet hats for cancer wards. I even sew pillow cases for sick children, then have a friend deliver them to a local Children’s Ward.

3) Reading: I like to get lost in a good book. If I’m curious, I do non-fiction. If I’m overwhelmed, I hit up fiction planning to get lost in the words and worlds of another.

4)Makeup: When confined to my bed for a long period, I’ll deck my face out for fun. It helps with my self esteem to feel pretty and it gives me something to do.

There’s a few of my tricks, hope they help someone!

I’m new to this. Although I’ve been suffering from spine problems from herniating six discs in 2005, and subsequently having four surgeries to fix them, I just developed a chronic illness a year ago. I am young, 28 years old, married two years ago, and I’ve always been a social butterfly.
It’s hard to say no to invites and to have to break plans with friends last minute. As this undiagnosed disease has me running a 101 fever today, I had to cancel plans for this evening. I am just too tired and miserable. I have noticed that some of my friends are just getting fed up with the “excuses” even though I cancel with them, not for lack of wanting to go. I’d love to have my ‘normal’ life back, but right now,its just not an option.
I understand they take it personally, although if they have been following my public blog and facebook updates, they know at heart it is me, not them. I am sick, it’s not that I want to be with them any less.
I am thankful to this site, and to facebook for helping me feel human connections throughout my lonely days at home. In times like this, when illness comes about, you really do find out who your true friends are, even if you don’t get to see them in person.

Always looking for FB spoonie friends. Friend me with spoonie somewhere in the request.
Miranda Stein from NY.

I fight being alone too much by providing a support group unrelated to my illness. I had a huge adjustment when I had to quit my job as a preschool director, which was a wonderfully social job. I have a handicapped child, so that was an area where I had really appreciated other parents who’d been through it when I was reeling from that unexpected development with an infant. So I get my ‘illness’ support online, but I reserve my ‘getting out’ energy to help maintain a support group for parents of children with special needs. My niche is helping parents of newly diagnosed kids. That way, I feel really good about helping someone else, without my face-to-face interactions being all-illness-all-the-time. Most of those special needs parents probably don’t even know I’m sick, because I can definitely manage twelve meetings a year. Except when I can’t, but that’s why we have several moderators. 🙂

Wow – this topic hits me right where it hurts (which is all over). I am experiencing this right now. Total isolation from friends and family. Some of my own doing, (dealing with severe depression along with the pain of chronic illness) and some of their doing. I have a friend who is totally there for me, but the relationships I use to have are all gone. Even my husband is getting tired of me clinging to him. Life is very hard to live right now.

This year I finally said “NO” and stayed home from the annual extended family pre-Christmas extravaganza with tables full of pot-luck food that is delicious, but way too tempting for my diet, too rich for my fragile digestive system, that often leaves me uncomfortable for days until what ever was in that mysterious new dish gets out of my system. Many of these people only see me once a year, but they all can drive and can afford the gas, if they want to see me so bad, they would come to see ME. They don’t. Some were kind enough to help me move last year– they somehow thought the wheelchair and the crutches in the corner of the living room were just junk I hang on to because they have never seen me using them. They talk behind my back about being a packrat– does it ever dawn on them that I actually USE the crutches? I don’t call them every time my knee locks up and I am home alone. Why should I bother them when I can get along ok myself untill the pain goes away? After several years of looking at scrap books of their trips to exotic places around the world, and me only having stories of my last round of x-rays at the VA hospital or the friends I make there that they don’t want to know about, I decided it’s time I made my own traditions this year with my cats and find another decorative canister to keep all my meds and my glucose meter and my blood pressure cuff handy, but not staring me in the face all the time. I have been collecting wild colors of nail enamel every time I go to the drug store, It is great for jazzing up my aluminum cane!

I restarted a support group in my area to do two things: give me something meaningful to do (aside from work) and do something positive with my experience with illness. It is really important for me to spend my energy doing something important and I don’t know anything much more important than helping people who feel scared and alone. I might not get to go out with friends, or go away on weekend trips or even run errands or clean the house, but aside from work, my number one commitment is to the support group. I love it!

I am too ill to leave the house except for doctor’s appointments. I do what shopping I must on doctor days. I use an electric wheelchair, so getting out and to town is the biggest expeniture of energy.
I determined years ago to develop a thankful heart. If my eyes open fully and I can sit up, it is a great day. I rejoice in little things. I don’t have energy to keep up email relationships, and have few friends, but I enjoy each one I have.
I also write when I can, and have two fiction books that should be published as e-books in two months. Rejoice, write. and play lots of solitaire. That’s how I manage.

Points well taken and very much appreciated. From my vantage point, I spend much time at home with only a few opportunities to get out. I need to do more to make the effort to do other things not related to my illness. Thankfully, dh comes to my rescue on this. I’ve recently added church activities as a way of giving back and taking eyes off of myself and focus on others that I may be able to help. I wrote this article because of the experience of isolation. I appreciate any comments than can add to the ‘way out’ of the pit of isolation. 🙂

What a good post. Like so many of the articles here, it was a great help to me simply to have this problem articulated & to realize a lot of us share it.

I wanted to speak up in defense of the people who drop us socially. I assume I’m not the only one who accepts invitations gladly, only to have to break them at the last minute when my health lets me down. Of course that is also exactly how one behaves when one doesn’t like a person but doesn’t want to come out & tell them so. It’s only natural that after the 3rd or 4th default, people quit inviting.

I’ve come to really cherish the ones who stick it out and keep inviting me — I’ve found that really sincere apologies, even when I don’t really have the spoons to do them, are a big help. It lets the inviter know that you value them and their invitation, though you are so undependable you recognize they have every right to be insulted.

I think another great option is to volunteer, if you are able. Places like local Arthritis Foundation chapter offices are great for getting to meet people who are living with chronic illnesses or just trying to help those who are. There are usual multiple types of opportunities, including some that aren’t too physical.