Tip: Handling Isolation That Comes From Chronic Illness

 

The title is ominous, I know.  But for so many of us that suffer from chronic illnesses, it’s an all too true reality.  I must preface this by saying that not all people who suffer with a chronic illness experience this.  However, the subtleties of it grow as time passes and one is confronted with the reality of it, be it large or small, at some point in their lives. 

It may be as small as the awareness of the decrease of invitations by friends due to our physical limitations.  For some, that awareness grows to a more glaring, in your face, epiphany that friends that were always there before suddenly wish no part in your life…excuses a plenty.  It’s not even relegated to just friends.  Family roles play a big part of isolation experiences for the chronically ill.  Those closest to us are often the ones to fall into one of two categories.  Faithfully standing by no matter what or those that turn a blind-eye and deaf-ear to our honest answer to their question, “How are you?” 

It’s important for the chronically ill to have a plan to handle times of feeling isolated.  This is true whether you’re feeling isolated now or think it’s a possibility for your future.  The realities of life are handled better if we understand the possibilities and have a plan on ways in which to deal with such times.  Let’s talk about some ways to handle isolation times in your life. 

  • We’re blessed to live in a time of the information super highway.  Social network sites make it much easier to remain in our homes, if needed, yet still be interactive on a day to day basis.  Whether it be local friends and family or online acquaintances, it’s there for our using and can keep us connected to the real world. Some suggestions might be the bydls.com on facebook or the butyoudontlooksick.com message boards

 

  • Not only do we have a multitude of e-social activities to participate in, we have a vast array of research at our fingertips.  We can be pro-active in our medical care simply by spending time doing a bit of our own educating. 

 

  • Can we say real life support groups?  If ever there was a source of interaction for the chronically ill and isolated, it’s support groups.   Some of the most wonderful people you’d ever want to meet are in a support group and can truly say, “Been there, done that!”  Or, they say nothing at all but have golden ears to listen with.

 

  • Blogging is one of my favorites.  It’s like your online diary.  I like to be able to express myself, and even my feelings of isolation, in words.  Many blog sites can be set to private so that no one, other than those you want, can read them.  Many of the aforementioned support group sites offer their own blog space just for you.  You never know when someone will read your blog and be totally blown away by the knowledge that someone else is going through exactly what you are.

 

So, you see, isolation doesn’t have to take over.  Yes, there are times where quiet reflection is needed but no longer do we have to draw back into a dark place in our minds where loneliness rules.  Like the old yellow pages ad said, “Let your fingers do the walking!”  Get out there via the internet and keep in touch with friends and family.  Find new friends that can relate to what you’re going through and can offer hope, encouragement and support that you may not have otherwise.  It’s a good choice to make and certainly a good way to handle isolation for the chronically ill.

Written by guest writer Rose Michels

Rose Michels is a long time supporter of butyoudontlooksick.com and a member and volunteer on the butyoudontlooksick.com message boards. We are happy to have her share her ideas and thoughts with us in this guest post and hopefully more to come.

©2022butyoudontlooksick.com
  • alana

    i have been mostly housebound and often confined to bed for the past 6 years with exhaustion and pain (just qualifying myself). it it’s isolating! i am thankful for internet. i have also recently lost my voice for months too so it’s very isolating. i have found restministries . com
    helpful and Joni and friends . org
    supportive.

  • Skyemom

    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.

  • KickMeWhileImDown

    This is my first visit here. My primary doc suggested that I find a support group. I do believe I am now facing my second divorce. He actually said to me the other day, “why don’t you go and get an f-ing job!” That stung because he should know better than anyone that I am unable to work.

  • ldsgirl

    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…

  • Grace Burke

    Facebook has helped me not to be so isolated because I communicate with other disabled people who do understand and who give me support. I am grateful for Facebook and the people I have met on Facebook.

  • Grace Burke

    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?

  • Val

    I know what you’re going through. There are only 2 menieres support groups in my entire state and I don’t even live remotely close to either one.

  • 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.

  • I have been sick for two years now. I was supposed to be off work for one week and here I am 2 weeks later waiting to get a Gtube surgically put in on the 24th of Jan 2013. I had complications from gallgladder removal but the doctor is to arogant to admit that and said I was a pain med seeker threw his hand up in my face and walked away from me. The GI doctor did basically the same thing. Funny part to the story I worked for my primary care physician. I went inpatient over mothers day and had a hospitalist figure out what was wrong with me and I begged practically offered to swap my virtue for a referral to MUSC in Charleston SC. I had to be on 24/7 TPN for 2 months before I could survive the sphincter plasty to be performed. I was so malnutritioned for so long I still do not experience hunger or thirst on my own so I am still not thriving so I am going to have a Gtube surgically put in. I had open Rouen Y Gastric Bypass 10 years ago and it makes the treatment for any of this extrememly complicated. I don’t know how to save my house, I did figure out how to get food stamps, but everything else is swirling down the toilet and I am going with it. I feel that if I could just go ahead and die my family could just grieve and get over it and move on. I have been so degraded humiliated and belittled I am afraid of doctors now. The MUSC docs have been fabulous. Oh yeah and even though I begged for TPN while I was sick from the Savannah GA doctors and denied this live saving nutrition because I lived and someone did figure it out I can’t sue. My teeth are all rotting out and I have to have them pulled when I am well enough to handle that surgery but there is no accountability on their part. I don’t know why the whine about it or pay for malpractice insurance it is impossible to sue them. I did apply for SSI at the advice of my surgeon at MUSC but in the mean time how to I keep what I have worked all my life for, I have worked since I was 14 years old now. It is sickening to watch it go down the drain

  • Jon

    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.

  • Helen

    I have been diagnosed with RA for only 6 months. I’ve been a special educator for 30 + years but being on the “patient” side is certainly different than giving advice to families who face challenges with “disabled” children. Isolation is something I’m beginning to experience as my old life crumbles and my new life is not yet built. What I do know is that planning ahead is crucial. I can also wallow in the isolation or use many tools: spiritual, emotional, physical and social.

    Spiritual
    1. read the Bible
    2. listen to the daily program on joycemeyer.org
    3. pray alone or set-up a prayer partner
    4. meditate
    5. call a church in my community and ask if I can be part of a group of people who prays for other people
    6. sponsor a needy child
    7. ask God how I can help someone else today
    8. ask for help getting to and from church service
    9. call local churches and ask for volunteers to come visit- be willing to visit other people who are shut-in on our good days

    Emotional
    1. accept the stages of grieving
    2. listen to Mindfulness Meditation or other recordings for pain
    3. use cognitive behavior strategies to monitor my thoughts and keep realistic but positive
    4. recognize the emotion I’m experiencing and decide to feel differently
    5. join a support group or start one
    6. check in that I’m not sinking into “victim” mode
    7. ask family members and friends what I can do to help them

    Physical
    1. do all I can to eat well and nourish my body
    2. move…. move…..move
    3. insist on health care providers supporting my need for equipment (walker, scooter). The Red Cross has a loaner program for some items
    4. ask for physical assistance from strangers and friends
    5. use the motorized carts in large stores
    6. get a handicapped parking pass
    7. take prescribed medications as directed
    8. monitor pain level and take adequate pain meds

    Social
    1. stay connected to people through my hobbies – for me it is people who like music and personal growth
    2. give….give….give: look for volunteer opportunities online or that can be done on the phone
    3. is there a needy family in the community I can prepare something for for Christmas? It doesn’t have to cost much
    4. nurture cherished friendships – don’t waste time thinking about people who don’t get it
    5. ask our doctor if there is someone with our disease who is a success story who wouldn’t mind being contacted to just chat
    6. are there any needs I could help with at local schools or community centers 1 hour a week or as take-home projects

    Alrighty – I feel better just sharing these ideas with everyone. Thanks for this opportunity and I hope that each of us keeps living in a positive way – making what contribution we can !!

  • Clare Turner

    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?

  • Nancy

    Start your own 🙂

  • Lahoma

    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 🙂

  • Bashly

    The internet hardly replaces human interaction. It helps you not become completely insane, but it’s really not the same. I’ve been in basically solitary confinement for a few years now. There really isn’t anything that can be done about it I suppose, just something you have to bear.

  • 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.

  • Regina

    Hi Elise,

    I find your comment about Facebook helping you with your sanity very interesting. I too have been suffering with severe pain, and if it wasn’t for my interaction with other people through social networks, I probably wouldn’t be able to deal with my neck pain and back spasms. I read this article recently about how social networks and technology can help someone cope, and it makes SO much sense, here is the link to the article – http://cot.ag/nNwRVW. Let me know what you think.

  • Elise Martin

    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.

  • Faye

    @Gail Ruff…I understand you completely. 30+ years with FM/CFS and a variety of other diseases. Too many doctors to remember. Too many up and downs to count. Too many job turnovers. Too many days of crying for the 30-minute drive home from work, crying from exhaustion and pain, crying from loss of abilities, crying from the “loss of my life” as I knew it. Crying from the fear of the future. Raising children, running a household, living a “normal” life even though you know that something is totally different with your body. Most doctors think that it is “all in your head” because they can’t find “anything” wrong with you.

    Now I’m dealing with heart disease that I’ve had since birth that doctors have finally found and are trying to repair. I had a small surgery last week and face another surgery in the next couple of months.

    I love my quiet time, love the quietness of living in country. Love being “left alone” when I don’t feel like talking, listening or being with anyone, including my husband. He understands, after all, he’s been with me for 43 years. Sometimes he gets frustrated with “all” of my illnesses and my not being able to “function” normally. That usually throws me into a tailspin, so I’m glad that it doesn’t happen often. I don’t like talking on the phone any more…did that for over 30 years while working. I can choose the time when I want to read e-mails or FB or support groups depending on how I feel and not when someone else wants to “talk”. I don’t mean to be anti-social. Family get togethers are the best and I love having my grandbabies over. I miss certain social events and hope and pray that some day I can return to them. I miss a lot of my hobbies and activities. But for now, I’m trying to improve my health without anyone telling my what to do nor when to do it. No matter how much the pain, I thank God for every day that I actually open my eyes.

  • Sandy

    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!

  • Francisca

    Great article, touching posts.

    I agree that it’s important to shift the focus from the illness, especially when socializing. People who don’t ask details about your condition don’t because they really don’t want to go there, mostly out of fear…and reeling on about it can be a turn-off.

    However, I often find myself in need of expressing this part of myself responsible for having completely altered the past 5 months of my life…I feel compelled to share my experience in the hope that those near me might also learn from it without having to go through it. (Futile, but maybe some day I’ll overcome it.) Wait for those few, like my visitors last night, who listened attentively and came to laugh with me about some of the ridiculous situations I’ve gone through lately.

    Then there are days like today when I really relate to the Messenger status: Invisible to everyone.

  • Kathy

    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.

  • Jeanette

    yeah, the isolation is pretty hard to take.
    thank goodness for Face Book eh.

  • Gail Ruff

    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.

  • Starwish

    Thank you for this topic. I wish I could have read on it a few years ago but this one never goes out of style.

    It is hard to watch that cycle start with friends or family as they start to pull away. Being told that you are just “weird” by the new daughter-in-law and that begins the pulling away of your son.

    This site is such a blessing, so many who really have “been there & done that”.

    Thank you Christine & crew

  • Good one Robert! I totally forgot about a game night, role playing or otherwise! I used to play poker with some of the women in my family quite often, and it so wasnt about the cards most times, it was about the company.

  • Back when I lived in New Orleans and knew more people online, I had something that no one’s mentioned – tabletop roleplaying games. Once or twice a month I invited a handful of friends over to my house and since I was the dungeon master, I could host it and not have to go out or get organized to go out.

    I didn’t know what I was living with in terms of chronic illness because I had no idea what being healthy was like. I just drifted into that role and spent most of my social time in RPGs. The main reason I don’t any more is that I moved and lost contact with those friends, who aren’t going to drive out of state to get together all at the same time for a reprise of those good times.

    Now my interests have turned more toward art. If I relocate and have more space, I’ll invite people in again on topic – run some art lessons, that’ll bring people over. Or find something else that I like to do with that all important element – that I’m hosting it where I live.

    The people who came over knew me well enough not to expect things to be as tidy and clean as if I had a wife keeping house for me. I wasn’t even the worst slob in the RPG group. That title went to any of two or three abled, energetic guys who were never home except to eat, sleep and toss their trash on the floor.

    For a while in another time and place it was medievalists coming over to work on making costumes and medieval crafts. It didn’t matter what it was – it mattered that all unconsciously I developed a pattern of inviting friends in and not going out, then showing them a good time without moving around too much.

    The great thing about counterculture and subcultures is that people are much less likely to be judgmental either of your housekeeping or your habits. My friends got it that I did not get up early in the mornings or work every day, that I didn’t want a Real Job or care about money enough to pursue one. I treated those things as choices so they were socially acceptable in those circumstances – and let me live around the disease I didn’t know I had.

    Knowing about it now, I’d turn down some of the invitations I dragged myself to when the gang would go out to a movie or whatever. But I think I could do it again if my living situation allowed for having people over.

  • Beth Worley

    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!

  • Granny

    I found that support groups and blogging just keeps people dwelling and wineing.
    I have found the best thing is to crawl up in bed and read God’s Bible. It is better than any medicine or human. It has drasticly changed me into a better life!

  • Crystal

    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.

  • BTW: Great article! Thought provoking and genuine. Made me really consider my world and how I cope, so thank you!

  • 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!

  • Anne

    I also find that it’s not that people avoid me – it’s that I avoid difficult situations. I have chronic migraine, which strikes abruptly. It was one thing when I got them occasionally – and my friends knew that sometimes I’d have to lie on the couch and ask everyone to be quiet… but, when that kind of thing happens a couple of times a week… It’s difficult for me to be out and then have to get home in this condition – and it *really* does not seem right to inflict care of me on all my friends, every other time they get together to have fun themselves! I’m also simply tired all the time.

    Online social network sites have been a lifesaver. I can have contact with people, even when I don’t see them, and maintain friendships. When I do see them, they are glad to see me – and, unfortunately, I often provide the evidence of my illness… so they do understand as well as anyone can.

  • 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.

  • Nancy Shell

    For I a long time I was just flummoxed by fibro- its unpredictability. I think what makes my friends, family and myself crazy are the good days. The days that come infrequently and you are back to your old self. Your friends flock to see the shimmering you but just like this island appeared in this sea of pain it disappears, casting you out once more to grieve and bear what could/should have been. I believe your friends just can’t bear to do the yo- yo. They can”t bear grieving continously about the you that was. Not ony do they watch your dreams die but they watch the dreams they dreamed with you die.
    I didn’t understand at first because just like them I thought I would just wake up one day and this would just be over and I would just pick up my life where I left off. Well, it’s been ten years now and that hasn’t happen yet so this fibro is my life. I am living plan B. Sick, poor and unemployed. Many people aren’t ready to look at a plan B life. Because it they have to look at Plan B for you they have to look at Plan B for themselves.
    I encourage you to keep trying to get out there anyway you can. I volunteer teach for two hrs a week. Sometimes that is a real chore and my body doesn’t want to cooperate to do . I realize I need do something like teach just like I need air. It also gives me something to talk about besides my illness. Yeah unfortunately isolation is apart of this equation of illness. So I take a phrase frome the muslims that I know and apply it to my own situation Inshallallah. ” If it is in the will of God I shall be , do ,have.

  • Sharon

    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. 🙂

  • Ann Fudge

    I have lost most of my “real life” friends. Some of my family understand.

    I have over 800 acquaintences and friends on Facebook. It has saved my sanity since I am often isolated because my CFS, fibro, peripheral neuropathy, chronic intractable pain and no stage 5 sleep.

  • Cathy

    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.

  • What a wonderful, inspiring, uplifting bunch of responses. You are all my heroes. I am a 54-year-long RA warrior ( I refuse to say sufferer or patient, maybe survivor) and I never felt left out or isolated till age became an added factor. It is just beginning to dawn on me that some friends don’t ask me because I’m becoming less mobile and much slower, but actually I find the celiac disease that I’ve only been aware of for about 8 years, is far more of a social problem. It’s hard to plan gluten free meals and/or find a safe restaurant, and a few friends don’t want to bother.

  • Paula

    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!

  • Pam

    I am so glad to see a topic like this tonight. I am semi-retired, and have found it more and more difficult to do what I like to do.
    After losing my husband last year, the isolation is very suffocating at times.
    The social networking has helped. Keeping in touch with old and dear friends have helped.
    But I am finding more and more if I put too much into any day that I pay for it for several days after, and alot of my family isn’t aware of that.

  • Carly

    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 think it is vital to stay in touch with others. While dealing with the physical limitations of chronic illness(s), I did not realize how my social life would change and those around me would react. Please don’t get me wrong, some valuable friends and family have remained. As I worked through all of this, I couldn’t comprehend the different attitudes and feelings that came at me.
    I feel at some times I am split in two. I have friends who also suffer with chronic illness who just get the lingo. Sometimes no words even have to be spoken-they get it. Then there’s the other part where I limit my conversation about my illness, my fears, my struggles, I smile, and say everything is ok. I think your right on, somehow, someway, you need to stay connected. A balance of both worlds perhaps.

  • Leona Burch

    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.

  • Since becoming ill, most of my relationships have ended – some by choice, some not. By choice, I cut off the majority of my family members because I don’t have the inner or physical resources to deal with judgments that I’m only trying to get attention; that it’s all in my mind; that I’m just being lazy, etc.

    A month ago, at a holiday function, a woman that I didn’t know gave me a huge hug. I was so surprised when I started crying, and realized how very much I miss that human connection and touch. It was a true hug and it hurt – but oh, it was worth it!

    I’ve come up with the outlines of an action plan. There are several acquaintances that I’ve decided to nurture friendships with. Since I’ve found art to be very healing and I love to read, I’m joining several monthly groups – one that involves creativity, and a book group – as another way of being connected. And I’ve decided that I need to be honest about my limitations from the beginning, along with being aware of the other persons perceptions and feelings. To work on finding a balance that allows me to “keep it real” without being perceived as “negative” OR as too “pollyannish”. Most important of all – to remember to nurture and befriend myself.

  • 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. 🙂

  • Heidi

    Westomoon,

    Thanks for saying just what I was thinking about breaking dates at the last minute. I think that, unfortunately, is the death knell for too many relationships, but I don’t blame friends who throw their hands in the air.

    Also, Rose, thanks for addressing this important issue. I think that sites like BYDLS and my V-EDS list serve keep me sane.

    But I also can get a little bit frustrated when people only suggest social interaction that has to do with my illness, as though the only thing I am capable of discussing or doing has the name of the illness I have in it.

    I feel it and worry about it all the time, so sometimes I want socialization that is something other than my illness, know what I mean?

    I don’t mean to disagree with your article, just to add to it. I sure wish I had a solution!

  • westomoon

    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.

  • What a great topic. I was forced out of my job just 2 weeks ago, and on disability. I don’ t have a plan yet, and I do tend to want to stay in my house ( it’s cold outside). Right now I am keeping in touch with my friends and seeing them as much as I can.

  • 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.