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.

©2024butyoudontlooksick.com
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  • Jasmine

    I’m really relieved to know there are people my age who suffer from a chronic illness and essentially feel robbed of their life the same way I do. My doctor just thinks I’m depressed but who wouldn’t feel a little depressed in that situation? I’ve started giving up on even talking to other people because my mind is plagued by my illness and they just want to shoot the shit about something superficial. You are not on your own with how you feel about this though, please message me anytime if you’d like to talk

  • Jasmine

    I know exactly how you feel. I’ve been feeling more and more isolated lately because people just don’t understand what it’s like. Sometimes you’re not gonna have people immediately around you who get it, but reaching out on a site like this lets you get in contact with people so you don’t have to ever feel alone. That’s the reason I came to this site so I could connect with people who have the same struggle, so I’m here if you need someone to talk to

  • Taylor Y.r

    i’m so alone with this. Like I see other people have it i understand that. But i have no one around me. idk

  • Rory

    You captured exactly how I feel.I feel like I’m living in a cruel funhouse, waking up each morning to say littany of inane things I do day in and day to try to stay, as my family doctor says, a ‘healthy sick person. Each day’s the same. Why get up in the morning? Every day, I administer an experimental device 16+ times a day – I live my life in 3 hr increments, rarely leaving the house. This is not a life. I’m 34 and have been dealing with this mess for 4 years.

    I’m reminded each and every day the burden I place on family and friends around me and it breaks my heart even more.

    I don’t like to say this to those few people who have stuck by me through this ordeal: it’s not fair – this chronic illness has robbed me of my hopes in life – dating to try to find a partner; having a family; being challenged and fulfilled in a profession that I can no longer practice and miss desperately; travel, live.

  • Hope

    Dear Crystal, I have fibromyalgia symptoms and brain fog but these have been lessened to a noticeable degree by consuming a totally harmless product called ‘Diatomaceous Powder’ FOOD GRADE only. You can purchase a huge 1kg bag from natural enzymes.co for approx £17 including p&p – just type in ‘Dyna Powder’ on Amazon shopping website and it’ll come up. Other quantities are available and from other companies, I just found this one the best value for money. Please research on Google, and read reviews yourself to understand how this little miracle powder works, and if you do decide to purchase, I wish you as much (and even more) success than I’ve had with it. PS: you can’t ‘Patent’ this powder as it is occurs naturally and is widespread , so ‘Big Pharma’ can’t have a monopoly on it and charge ‘the earth’ and make obscene profits!!

  • Hi everyone, I am a professional photographer and world traveler for almost 40 years. I am starting a new business that might be of extreme interest to yourself, families, or significant others. I am designing a new business extension from my fine art travel, and workshops for people that have always wanted to go somewhere like a special national park, a carnival, or any special place you dream about but never would be able to see in real life. (NOW YOU CAN) I will be starting this business for friends like you. I will sit with you and your family, talk over a complete plan we all design together. I will then go to that special place in my camper or tent for a week or so, taping the whole experience, photographing, and bringing you right along with me. Thats right, we will be in contact through facetime or other technology, so you can actually see what I see, and go where I go. Have input on where I shoot and go. We will talk and keep in touch this whole time. Then an overview at night about our day, or the mornings, whatever you prefer. When I get back, you will get a professional edited video of the whole experience, a coffee table book of the best images, and some framed images to hang. I have some disabilities myself, so I do understand things that other without disabilities nay not. Please have a look at my websites to see my workshops tours, and fine art photography. Contact me to talk about any questions you may have.www.kevinophotography.com http://www.kogalleries.comHave a wonderful holiday and Christmas. Kevin

  • Anonymous12345678900000000

    I also just turned 26 in July and have been chronically ill for 7 years. I had a few good months here and there, but back in Feb my whole life came to a crashing halt and I have been stuck in bed and out of work since then. No one seems to understand at all, and all of my friends are doing great things at work or traveling or getting engaged! How can I participate in anything if I can’t even get up to make myself a meal? I feel so completely alone and miserable all of the time.

  • Crystal Dorton

    You are me…My heart breaks for you! Keep your head up. I thought I would never be able to say those words with true meaning again, but after reading your story I realize more than ever I’m not alone. I’m not glad that you experience the same things that I do, but I’m sure you understand when I say no one understands. Were lucky a man like this would love us anyway right! I forgot to mention I’m 33 and was diagnosed with Fibromyalgia three years ago, but have suffered for years. It’s horrible to feel this way. I apologize for rambling I’m brain fogged:), and this is my first time reading these times of blogs. If you EVER need someone to LISTEN send me an e- mail. I hope your doing better than when you posted this! HUG’S!!!!

  • bec

    You should seek diagnostics for hypo-pituitary, which is a common side effect of head injuries – hypo-pituitary causes an under-functioning of many hormone roles in the body which leads to many debilitating symptoms.
    You should have had a head CT scan after such an injury to rule out any abnormalities.
    Please do get this serious condition ruled-out. You are a prime candidate.

  • M. Shea Butler

    I am new to this site, but I just wanted to say Blessings to you for your words of eloquence and beauty. I too live in the chronic illness world and have for most of my 43 years, but despite my pain I was able to obtain three degrees, one in business and accounting, and one as a registered nurse, and a third as a licensed social worker. I was in the process of obtaining my doctorate in psychology when my illnesses became so severe that I was forced by my neurologist to go on disability. He had watched me over a period of ten years struggle to complete my accomplishments, each one taking longer than the one before due to chronic illness set backs. At which point with my doctorate, I had worn myself out so much I was in the hospital more than I was out my auto immune diseases went from being in remission to full blown flair ups more days with than without. I suffered a stroke and had a heart attack a year apart all because I wanted to prove to myself and to others that I still had what it takes to be the “old” me before chronic illness became a term in my vocabulary. That just bc my body and mind were riddled daily with immense pain I still had a great deal of time where my mind was clear and I was still very capable of making sound decisions and offering sound advice and support and a pair of ears willing to listen for hours, if need be, to anyone who needed me. I still keep my licenses up to date even though I know I will never be able to return to the daily work force, but I worked hard to earn them and sacrificed so much to see it all through I just cannot let go. I suffer from extreme loneliness and abandonment issues bc the people I thought were my friends have all left, and never looked back when they found out I now have less than six months to live, my mother and my siblings have all but left me bc they are “sick of hearing me talk about being sick”, even though they are the ones who bring it up. I have been very Blessed with a loving husband but we all need more than just one person to depend on and turn to for encouragement. I still live with several days a week with doubt low self esteem anxiety loneliness and many other ugly self hating emotions, but I continue to take each day in baby steps and with a boatload of positive affirmations taped all over my bathroom mirror and reaching to the Man above and praying He will hold my hand for whatever comes my way. But, most importantly the positive encouragement that comes from such impressive people as yourself means sooooo much to me bc it truly stays in my soul and weaves a web around my fragile heart to help me make it through the most painful trying difficult times when I have people say, “you don’t look sick and besides you are way too young to be sick enough to be on disability”,; so thank you for your words of wisdom and your gift of strength through the power of words! You are a beautiful human being. Namaste’ S. Butler RN LCSW

  • Momo

    Chronic pain has stolen my life and I want it back. Every morning my goal is to survive the day…this is no way to live. Why do we get to be “sufferers” and if you have cancer you become a “survivor”. My days are full of putting on a happy healthy front…it’s exhausting. People get so uncomfortable when you tell them that the pain is bad or that you’re exhausted. Why is an acquaintance’s emotional comfort more important than being honest about my experience? I’ve been doing this for 14 years and I continue to collect more an more questions….instead of answers. I miss my life.

  • annajrc

    communicate. I do that lots with family n friend

  • Beth

    I just wanted you to know that someone read your post and can empathize with you. Chronic illness and pain is hard enough but adding depression and anxiety is next to unbearable. I’m also very sorry about your family. Your heart must be breaking. I can imagine the worries associated with what you’re gonna do post-surgery. I wish the best for your procedure and hope you were able to arrange for someone to watch your cat and take care of you when you get home. And IF you decide to move into assisted living many places let you keep your pet. Don’t put your cat to sleep unless it’s sick/suffering. Write back and let me know how the surgery went?

  • musiciangirl591

    i had an ex who completely and totally supportive of me and the seizure disorder and everything that went along with it, when i went through my depressed period (september 2012-july 2013), he was there, he isn’t anymore and i have no one to discuss my feelings with without feeling dismissed and treated as “overdramatic” or even worse, using my illness for attention and sympathy (which i don’t anymore, i’m not a teenager)

  • INANA

    What a journey you have had through life thus far….I don’t know how you are doing now in terms of your Health? All I know is that “Coping” is not the easiest when Life gives us a few rotten apples….however if we happen to pick the entire rotten basket of apples – then the only prudent thing to do is throw it all out and start afresh. I know it is easier said than done specially when you are standing on the thresholds of surgery and maybe paralyzed with Fear. When we are Afraid or in Fear that usually means that we have already thought and imagined the WORST case scenario of all that can go wrong. Normally we keep our past experiences as the benchmark for our future expectations. However, oft times than not when all is LOST that is exactly when we persevere and learn to live on HOPE alone. This has been the journey of the human race….an adventure against all odds through 40,000 years of Human existence (maybe more). You my dear is a proof of this ” Hero’s Journey” having gone through so much that there maybe nothing else left in your kitty to go through. For all your fears it could also mean that now is your time to be HEALED and as in all Healing you have to have Hope, Courage, Patience and Determination to see it through right to the end! You have nothing more to loose…maybe now is your time to start making gains! So rise up and embrace your new start in Life you’ll never know who the winner is until the End Line is crossed. So good Luck with your Surgery and may you be on the road to your Healing Journey. Also please keep in mind that sometimes you learn all there is to learn about “What not to Do” for or from your immediate family! So take that in your stride and Keep your Faith in the goodness of Humankind for you don’t know who might give you a lending hand…..when you need it the MOST !!!

  • INANA

    In Life we come alone and go alone….all the other associations we make are but impermanent. Some last because of a reason, some for a season and you are lucky if you have one that lasts for a lifetime.
    Connection is easier when people are on the same wavelength or have gone through the same, situations, challenges and solutions. Which my dear borders on an improbability – it’s like shooting darts in the dark and finding the target. So don’t even pretend to “gel with the crowd” as is oft the findings of our need to be accepted in society – we can be in a crowd and still be lonely or we can be alone and in complete unison with ourselves. The choice my dear is not the easiest of ones. So do what you feel like but don’t forget to snatch the little rays of happy moments that may come through your window. One appreciates the pleasure of light only when one has lived in the dark for a period of time and then even a ray of light is like a divine intervention! Such is BLISS !!! Your family for all you may know…loves you just the way you are – without being pretentious and no need of masks. Sickness my dear is not your burden – accept it for what all it has taught you. Fragility, Compassion, Dependability, Stillness etc all emotions that make you feel Human! Albeit a questioning one cause it takes great deal of Inner Strength to tread through life feeling like a Burden. You need to set yourself free from the feeling of being a Burden and embrace your purpose of coping with whatever Life hands you. The added benefit here dear is that you don’t look Sick….so savour the feeling of being ALIVE and looking good while being SICK ! Ask any SICK person this and they’d trade places with you any day !

  • INANA

    Hello sweets….you are a wonderfully strong and remarkable woman who choose to go through this aspect of her life and bear her scars with pride. It takes great courage to bear your success with humility and wear your scars with pride. To such a woman of fortitude I have no words left but to say “WELL DONE” for all that you have achieved with your given limitations. Whether we work or not (sometimes due to physical limitations) really makes no difference as long as we are able to do the BEST we can in the given circumstances. I know and feel that you have passed several milestones in your Journey through Life so far….seen,heard and felt so much more than most people get to see, hear or feel in their entire lifetime. This my dear is a GIFT that makes you the COMPASSIONATE human being that we all should be when we start our journey in LIFE…however most of us go wayward halfway into the plot. Come our prime – Compassion gets replaced by Arrogance, Greed, Pride and we then feel ourselves invincible till good sense prevails (if we are lucky).
    I know the language that you speak and am in-sync with the beautiful melody that is YOU! Never loose your COURAGE for you are meant to be a shining example of what it is to live LIFE despite all odds and anyone who goes through this journey will be inspired by your fortitude.

  • i understand completely

  • Ashley Dalton

    i am turning 26 in july i was always a very chronically ill kid on and off years at a time it now fully taken over my life and has defined and taken everything from me. It is extremely hard and like the person below me sometimes the effects of being ill..isolation people not understanding us or not really wanting to interact with the ill are worse than illness itself, i feel like sooo judged its crazy. when i try to date i am judged by not nearly as harsh as the dater but if it goes on into more..his family ..”so shes sick and she does what?” how does one explain or even begin to explain the answers to a question so broad and hard to relaly hit home to someone so unaware of the chronic illness world. we are like a secret that no one wants to talk about. but if you have cancer then hey u get recognition..yet Chronic pain and illness syptoms are very similar from one disease to the next. and mine are the same as say cancer pain yet im still looked at crazy for being on so many prescriptions and looking normal. young. again a secret. I feel the largest secret in medical community no one pays attention to is the chronically ill young adult and what happens to us after pedicatric care how do we move into adult hood if we are constantly treated like an outsider.. i feel like an ALIEN bc i speak another language. and my day consists of getting through it not partying it away. what could i have in common with anyone my age

  • musiciangirl591

    i’m 22 and have a seizure disorder, its hard to have no one to relate to (i’m from a small town), but i get by with a sense of humor and a smile

  • tammy

    Hi, my heart is crushed, I too have a chronic illness that hes changed my life in ways I never thought possible. I was told I would die back in oct. when rushed to the ER, i have made it but sometimes wish i didn’t because my husband wants out of our marriage because of my disabilitys i have alchoholic end stage liver cirrhosis and whats called hepatic encephalopathy, that deals with some brain issues at times. i am still the same person and i do have wonderful friends and family helping, but my husband has broken my heart. hes awful to me and my divorce will be final in august.

  • Hailey

    8 years ago at 16 I suffered from a head and neck injury. I’m 23 now. I have suffered from a multitude of symptoms that has made progression in life nearly impossible. I am completely isolated. I have tried through out the years to maintain relationships with friends and family but no matter how hard I have tried I fail to feel and connect with people. I feel like I’ve put my family through so much with no improvement. My sickness isn’t going anywhere it’s my burden to bare. I am the absolute definition of “you don’t look sick”.

  • Maujy

    My heart goes out to each of you as no one really understands what its like to be alone with a chronic medical condition….sad to say it comes to us all. So for all those sprightly healthy souls who look down their nose and offer well meaning advice such as………”You need to get out and make some friends or join something” Or “when last have you been to church?” I say without intentional malice…I hope you never find yourself with the shoe on the other foot….so to speak.
    I am 68 and my tale of woe began 8 years ago when I was diagnosed with degenerative spondylolisthesis which simply means spinal disc slippage. I have been a widow since 2000 and do suffer with anxiety & depression which began after the collapse of an 18 year mental & physical abusive marriage that ended in divorce in 85.
    After my 2nd husband was killed in a hit and run I found myself with hardly any money and no past work experience except housekeeping. This I put to good use by housekeeping for my children who worked out and caring for grandchildren. The work was helpful as I was paid a salary that helped me to live from month to month…my rent for a 2 roomed apartment I managed to pay myself. The work at the same time was heavy working 10 to 11 hours a day sometimes but never less that 8 and 5 days a week washing,ironing,sometimes cooking, always cleaning a 6 roomed house plus kitchen & bathrooms as well as fetching and carrying kids to & from school. And the washing was so heavy I used to stagger my way from the laundry all the way to the wash lines. Needless to say I was forced to stop work last year as I was beginning to find the back pain unbearable. I am now awaiting spine surgery and would you believe it I hardly ever see my family. The grand kids are all grown and finished school and 2 of my 4 children have immigrated. It seems like everyone is just too busy with their own lives to remember me and I find the only time I am remembered is when I’m needed for something. So now I find myself alone with my aging cat whom the children say I need to have put down and move on to an old age facility next year. And as the time of surgery approaches( it should be within the next month or 2) I live in fear of who will look after my cat and who will be there to care for me post surgery. So far no one has offered to help me with anything pre-surgery never mind post surgery and they are well aware that I use a crutch and find it difficult to walk. Even though I have a car one still needs to walk through the shopping malls etc.One needs to cook,clean and do the washing all the normal household chores which is fine when you are well. Its this mindless selfishness of the family and church members that really appals me. And of cause as we all know with any chronic ongoing condition depression and anxiety are there to join forces. Sorry my post is so long but it felt good to air my problems. Thinking of you all.

  • maujy

    Don’t know when this was written but have to agree with annajrc.

  • Frank

    It’s a tough bone to chew on, my wife has been chronically ill for most of her life. Though their are times when she can move around and looks quite well. It is just a day that she’s able to cope well and nothing more. People should appreciate the time and effort put forward to spend time with them, often they don’t and it does lead to all kinds of negative feelings.. It’s an over-all misunderstanding about the battle that chronically ill people face day by day. This is none thing new to most people who are generally missing opportunities to be in social situations, my advice would be to have a heart to heart with your friend and express your sadness in not being able to help look for her dog. That you friendship is important, and you feel that the incident has damaged your relationship. If your friend doesn’t accept your situation, and your explanation. Your going to have to move on, an upside would be no long feeling anxious over the relationship. It’s hard to find people who are willing to put forth the effort and keep up the relationship with a chronically ill person. Personally I have seen all and any friends disappear completely over the years, even family have distance themselves from us. We are grateful that we have each other and give thanks more often than not. I stand by my wife, I am understand and caring and compassionate to her needs. Don’t think because your ill that you deserve less or less worthy, because your not. Have faith that the right loving people will come into your life and love you for who you are. God Bless and I hope this was helpful.

  • jozie

    “Church”, what a Joke!…I have felt the loneliest in these places. “Family”, You would think when illness strikes and while in your most needful hour, they would certainly pull thru for you and be faithfully committed, Right?, Wrong! “Fiances/Husband” same thing. I was devoted to my lover for over 10 yrs and when He discovered my diagnosis He was out of my life in less then a week with not even an explanation…Oh how the running it over and over in your brain trying to pin down the reasons why people you were sure would love and care and support you faithfully, goes awry? How could they desert you, abandon you and live with their consciences? I’ve sat in intense chemo ALONE, Vomiting violently, Fever, chills, bowel obstruction painfully bleeding, painful body aches, migraines that make you vomit, depression, anxiety, unable to do basic things to keep my life sustained such as grocery shopping, cleaning my living space, washing my bed linens…I’ve gone without those basic needs on many occasions. The Church calls to check my Sunday attendance Saturday night. Family claims their lives are so busy that they can’t spare any time, Really? Excuses Abound! People say join a Church but I’ve got news for you church is the worst. They see membership as a necessary means to appoint services to those in need or you must first prove yourself to the leaders…you try at first to stay committed, but then your illness keeps you from being dependable/reliable/committed, yet nobody gets it…you want so badly to live up to their expectations and when you cannot, they divorce you! I have been heart broken and crushed by the church. How sad that is. I have a family full of professing Christians who would not give me a time of day? Really !!

  • Rhonda Pope Maddux

    I can REALLY relate to this. Years after being driven out of my final nursing job because I just was too sick, I am almost completely isolated, and I can relate to everything you have said. I follow FB support groups, but even that gets overwhelming. I am almost always in bed. Maybe only a handful of people understand I don’t WANT to be stuck in bed. I am usually in pain, and sometimes a lot of pain, even though I have an internal morphine pump. Anyway, even though my family loves me, when we are together, I feel disconnected from the conversation and inadvertently left out. They can’t relate. But I reember being normal! This causes me great anxiety. The real me is trapped inside of this sick body.

  • Tears in Heaven

    1. People don’t even know how they (as themselves) are feeling, REALLY, let alone others. They are also more concerned with themselves than others, I might add…
    2. Really, good for you that you get to have good days! That is an accomplishment in health that deserves the celebration(s)! 🙂

  • Tears in Heaven

    Wow, well, I don’t know if you’re a spiritual person, but there is this saying that goes: “If God took someone out of your life, he/she did so for a reason. Don’t run after them.” I can’t believe your friends left you in your time of need. You’re not alone. This has happened to all of us (it happened to me, and it’s never easy.)

  • Tears in Heaven

    Ok, well don’t harm yourself. Here is my reasoning: so you harm yourself or (gasp) commit suicide, and then what? You have to deal with the mess and with healing yourself or worse, you aren’t even alive anymore to enjoy what it might feel like to “just get away” from life via suicide. I mean, a lot more people would commit suicide if it were actually something that brought promise, but it just brings *lights out*/nada/. You don’t really get to experience any relief from harming yourself. I know I’m not making it sound attractive, but just don’t harm yourself. It won’t make a difference. Just sit there and cry that shit out. Sometimes, I don’t know what’s worse–a hard ugly cry or actually harming the self. Both bring pain but in different ways. Cry is much more cathartic in the end. Physically harming yourself isn’t nearly as painful as actually crying that shit out. You want to feel pain to know you’re still alive? Cry.

  • annajrc

    I should be sleeping, but itching itching intead. Grrrrrrr..I promised them I would not harm myself. Promises, promises.

  • bulldogmommy

    I know you wrote this 4 yrs ago & you’re right but there are instances when it’s not-especially a close so called friend I met thru our husband’s-she’s a teacher-she new about my disability/inablity to leave @ spur of moment-She became widowed @ 59y/o-She would come over every Tues nite- even when I wasn’t up to it-I played hostess,make us a lite dinner 80% of the time-helped her emotionally & + thru her grief,invited her to family holidays,BBQ.even a vacation-suddenly she started to pull away & Last year after the holidays-she said to me when I CALLED TO CHECK in on her-She told me after not seeing her for over 2 months-her choice THAT SHE COULD ONLY SEE ME @ CERTAIN RESTAURANT 1X A WEEK-SHE KNEW i COULDN’T KEEP UP W/THAT & i WOULDN’T GIVE ME ANSWER FOR THE CHANGES??? She really broke my heart especially since I’ve been dealing w/chronic back pain & fibro since I was 27 due to a WC accident working as an RN-People dropped me like a bad habit-I don’t have kids-there’s 1 excuse,no time etc….I learned to be my own company,thank God everyday for my hubby & my dog…Tried support groups-none on LI,NY & facebook really didn’t help because as soon as people found out my backstory the lunch invites were suddenly blown off-You have to judge each story individually.

  • Ella

    Wow, this is me too! I’m sorry there’s someone else out there having to go through what I go through but also, I’m glad I’m not alone. Every day is a chore to live-for the past 10+ years.
    I hope your body and brain heal. I hoped mine would but it hasn’t and won’t. I don’t have anyone in my life but my husband who is not emotionally sensitive and can be emotionally abusive. He can’t help who he is because his life has not dealt him any harsh blows.
    I hang by a thread most days. I contemplate suicide but I don’t want to die. I am just tired of the struggle.
    I know that you are spot on about face to face interaction making all the difference and that kind of support can lift u up. But finding it and being able to participate even if u did find it is impossible for me.
    Thanks for sharing.

  • Kaci Champagne

    I have no idea where to start!!!

  • annajrc

    On the positive note I DO appreciate you actually taking your time and devote it to attempting help for suffering people out there. I’m not a complete old grouch… yet. Few more years of this and I may be.

  • annajrc

    Uhm. Yeah. Well, I have had experience with online support groups, ALL 5 of them, where numerous members criticized my medical issues at my first attempt to explain what went on. Unfortunately, I’ve been too ill for the past 4 years to attend real life groups. Isolation does NOT get resolved from participating in these blasted real support groups and chats anyways. I’m sorry, but there is no adequate substitute for a face to face discussion. My brain is too dissociated and confused to blog and at times I can’t even hold a conversation. Am I being too cynical? Perhaps. Sometimes life hands out tough shit cards and that’s certainly one of them.

  • kelly Jo

    I couldn’t have said it better about being concerned with having visitors when you can no longer clean your own home! People say I didn’t come to see your home but when you were used to having a nice clean home and can no longer do it and I for one am in a very dark place being 23 years of severe chronic pain and 4 years ago became totally disabled. Up until 4 years ago if I new anyone was coming I didn’t care how much worse my pain got, I made sure my home looked decent. I’m fighting depression and trying to except that I can’t do much of any thing so while I lie in bed day after day yes I feel the same way about people visiting! I’m not vain but extremely depressed! Beyond emotional and have been crying uncontrollable for a couple years, Thank you for your post about company verses a home you can no longer keep up. Yes I’ve got bigger fears like how to get to a dr app and how I’m going to eat today but being in these four walls for so long. Yes my home is on my mind also. I’m new to this and I was never one to be poor me! I was a fighter for nineteen years and never gave up but the past couple of years I had no choice my body gave in beyond my control. I’m zoo sorry for any one living in isolation due to what ever has put you there!! I joined to try to accept my isolation!

  • Guest

    How do I go back to profile to remove my last name?

  • Guest

    I don’t want to use my full name I’m new so put my full name for new account. How do I change this. To change profile name to first name only?

  • Leslie Elaine

    My ex had shingles for 2mos and he made it into a competition of who’s in more pain. Since I’ve bn in chronic pain for a few yrs he downplayed the severity of my spinal injuries. It sounds like shingles is painful on so many levels and I’m sorry you’re also having such a severe case too! You are fortunate to be able to work, even if it is for just a few hours.
    I just saw that your post was a few yrs ago. I hope it is all a distant memory now!

  • Leslie Elaine

    Have you tried local churches or charity groups? You don’t necessarily have to be Catholic to get help or support from Catholic Charities, for example!

  • Leslie Elaine

    I’ve found that you can’t just last it all out there and hope that everyone will have such understanding to digest an extreme event. I downplay the amt of time and severity since most ppl just shut down if they cannot fathom your issues. You can’t just shut everyone out because you’re dealing with something extreme if you don’t try to understand where they’re coming from as well..

  • Leslie Elaine

    I’ve found many support groups on FB that are filled with beautiful, supportive, caring women mostly. There is also an association founded by a lady and her husband for invisible diseases. It’s not quite like having meetings, but you can post and converse at any hour with people all over the world who have the same issues! It’s been such a relief since I’m in Oklahoma and there aren’t many resources here. I hope you find some groups that can give you the support you need!

  • Leslie Elaine

    Thank you for the suggestions! I too have been struggling with being bedridden and isolated for about as long. I’m concerned with having visitors when I am well since I cannot clean my own place anymore, so I’ve shied away from having company, but can’t afford to go out often either *le sigh*

  • Leslie Elaine

    I have found several support groups on FB for various invisible diseases and there are associations for chronic illnesses all over the internet that offer substacial articles outlining these issues, common reactions, and how to verbalize your issues. Maybe you could find a group for chronic pain and management that you and your friend could join together to help the two of you understand eachother’s POV easier. Good luck!

  • Leslie Elaine

    You are fortunate to have an SO. I am your age, but the man I was planning a future with left after my accident 5yrs ago. My friends criticized me for taking pain meds and gaining weight, which causes me to have severe social anxiety also. You are not alone in how you are feeling!

  • Trisha

    I am 34, had to quit working last June, and had major surgery 4 months ago. I find that anytime I am away from my house for more than a day without my significant other I get really bad anxiety. Before my illness I was very independent, involved in the community, busy, etc. I am happy with my quiet life at home but am sad I feel such anxiety being away from home and away from my significant other. sigh. tonight will be my first night away of a week long stay at my dad’s. sigh.

  • Ruby Roberts

    My problem is that because sometimes I am well enough to socialise sometimes, people underestimate how sick I am. Because they only see me on good days, they get a misleading picture of how I am doing, I just had a huge falling out with a friend who was angry at me for not looking for her missing dog. She has just been diagnosed with cancer and felt like I was abandoning her. I have no way of telling her that I couldn’t because I was too unwell, so she thinks I was just being heartless. I don’t think I will ever be able to convey the reasons why I was unable to help her that day but I know people here will understand when I say I COULDN’T do it. Not “couldn’t be bothered.” I couldn’t. I feel like I have lost a friend because she has taken it personally and just thinks I am a bad person. The problem as usual is that “I don’t look sick.”

    Really really frustrating and sad. What can I do? Sigh.

  • Ann-Marie Martin

    This may not be supportive so I am sorry if it is not, but it is just a personal story. When my daughter was 17 she got really sick with m.e. or fibro, or chronic fatigue or one or two of those fine things, she had to drop out of school and she lost her voice for over a year. The voice loss I think was caused by a terrible unremitting cough that she had along with fevers and pain and all the other fun stuff. The loss of voice should never be put down, it is so important for us to feel heard. She got her voice back with the help of a wonderful speech therapist who had moved to Scotland to work with the NHS from the States, very lucky for us because up till that point the therapists we dealt with had only worked with stroke patients and had no idea how to deal with this kind of inability, mostly they told her she was too tense and tried to very painfully loosen up her throat muscles and constantly made her listen to relaxation and meditation cds and told her to practice meditating. The lady from the States taught my cc how to talk again, and that you should never force a whisper as it erodes the voice box. muscles. My advice to you is to stop looking at this like it is a bout of laryngitis and get referred to a good speech therapist.
    I was really supportive of my daughter, she is my life and I take her health and happiness very seriously, but not in a controlling way, but I make sure I am there when she needs me. But very few other people were supportive, which really surprised me. I believed in her and knew that if she said she could not speak then that was the gospel truth. Now I love my mum but she did this weird thing when we were out where as soon as my cc would try to talk to us after a long period of silence my mum would start talking really loudly over her. I have fibro and m.e. myself so you can imagine the fun trying to protect my daughter while not hurting my mum lol. I found it very stressful. It was difficult to deal with but I am so proud of her, she practiced the exercises and they worked and got her voice back just as good as ever. She is 26 now and is working towards her nursing degree and she sings and talks. Where you are just now is very difficult and don’t let anyone tell you different. Your goal is to change this by whatever means you can and I really wish you well and hope that you have someone to support you through all the silliness the medical profession throws us. You deserve a quality of life and that is what you are fighting for xxxx. I am on gmail if you want to chat, or have questions. [email protected], also on facebook as Ann-Marie Martin with a pic of me and the gals with a huge blowup pumpkin in front of us.. I wish you all the best in your journey. .

  • Helen Kapoor

    About.com have very good online groups.most seem to remain very active.

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