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.

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  • I’m Red and I’ve been a volunteer moderator and webmaster in chronic pain communities for over 22 years. My spouse and daughter are pain patients, one with Trigeminal Neuralgia and the other with Parkinsons.

    I can testify to the power and grace in a single phrase: “You are not alone.” Quite apart from specific advice or suggestions for coping in chronic disease conditions, this sentiment is deeply emotionally sustaining for millions of people.

    With others, I have taken my participation beyond support groups to write and publish on behalf of people in pain. I am now particularly active on issues pertaining to the unreasonably hostile regulatory environment which surrounds pain management with opioid analgesics. I’m also easy to find in a google search. Feel free to look me up.

  • It’s Chrissy, different account. I’m sorry I missed your reply. Your very kind to take the time. I’m in a better space today, for now.

    I’m actively looking for a balanced support place. Knowing that we’re individuals with different experiences but sharing common ground can be lifesaving some dayes. The last year of being open and out there in social media (disability politics has been vicious and eye-opening to what’s actually in our neighbors hearts) really took it out of a lot of us.

    Please know that just knowing someone, a lot of someones, get it; that I’m not the whiney angry ungrateful exaggerater without trotting out the most recent mri’s is invaluable.

    ????️

  • elizabeth krall

    I am sorry. Sometimes I feel like not going on. It is not so much that I want to die as much I just long for a moment of health and freedom. I want to drive my car. I have already given up so much; gardening, being in the sun, most exercise that is outdoors and requires any kind of physical exertion. If one more person says to me ‘you have to stay positive’ or things could be worse you could have “insert something horrible” I will explode.Or “this too will pass” I will explode. Yeah – the universe suck.

  • ????☕

    I’m Raven and I’m a young adult who has had JIA for 14 years and have grown up in an emotionally abusive family who has never supported me and makes me feel bad when I’m in pain, so I just have been isolating myself for years and attempting to talk to my family about helping me get through down times with no luck because I have nobody else to turn to. I feel like I’m not allowed to have any support from my own family and I’ve been so alone with dealing with this by myself. My mom kicked me out because of my illness and she had another baby and couldn’t “take me to doctors anymore” even though she had stopped taking me for about four years before that and my mobility and sever pain just made everything worse when she did, I had to drop out of school, and wasn’t allowed to do online school. I had to do things like a “normal” person and there was no way to compromise with her. I had to move in with my grandparents and things are still the same, and I feel like there’s not much hope in my life. Things I can do are so limited, I’m in too much pain to focus on anything, and there’s nobody in my family who supports me when I’m trying the best I can to do what I can. Thanks to anyone who read this

  • I’m Chrissy, I have a rare genetic complex that presents itself differently in each person called Tuberous Sclerosis Complex. I also have Chronic Idiopathic Urticaria and Cushings. Everything in my life has been and is a unicorn and it’s not something I smile about inside. The support groups I’ve fallen away from. I’ve been doing this with a diagnosis for 9 years, incorrect diagnosis my whole adult life and I’m 52 now. I’ve written for years but I’m running out of steam, sincerely. I keep being told to “get offline” etc and that I’m being unhealthy trying to socialize this way except they dont GET IT! I have no car, no license, live on a limited bus line, almost nonexistent budget, no friends because, you know how it is being chronically ill let alone with three rare things (You know we are delicate flowers who just like to make everyone else uncomfortable) and where the heck do they think Im going to find a LOCAL TSC support group? I’m sorry, I know I’m blowing up right now but I’m so lonely and so frustrated and feel so shot down after years of this from one side to the next no matter HOW validated my illness becomes, it always something Im not doing well enough, right enough, good enough, hopefull enough, long enough, cheerful enough, pretty enough, regular enough, normal enough (“You know everyone has a cross to bear” — You know what, you’re right … take one of my many… you want my lungs, my kidneys, my seizures, my migraine clusters, my blood pressure, my pancreas, my body movement disorder and allllll that goes with it … theres lots of crosses to choose from here) meanwhile I’m alone alone alone 24/7 dealing with only two other people regularly. When I deal with the other people related to them … they don’t want to talk about the situation with them, politics, and my illness can not even shadow into the conversation without THAT look … ? What am I supposed to talk about … gardening? I don’t garden. Art? You don’t paint. Books? Neither of us have read an entire book in ages and certainly not the same genre. YOU want to talk about your STUFF, your things, you are impatient with me when I talk or discuss something I feel is important.We see each other MAYBE once every few weeks, can we talk about something real, like what you think about something or maybe say something TO me and not AT me? You want me off of FB? I’m HERE! Treat me like I am!

    EDIT: These impatient head thrashings were not aimed at you, they are aimed at the universe and people who have brushed us into the dustbin

  • Michele

    Hi, I’m Michele. I live with multiple chronic illnesses. This year multiple diseases in my spune have been in pretty severe pain, but I’ve found that injections there can give relief about half the time, and we are buying a TENS system this week to help out. The real big deal is that problems with IBS have become so severe my doc is testing me for gastrointestinal surgery and I’ve lost my ability to eat solid foods. It’s just me and my partner. Even my best friend of thirty years was totally nonresponsive to the situation when I reached out. I guess it was more than she could handle. I’m just hoping to talk some here sometimes to share the good and bad and hear about others’ lives, and maybe say a few good words.

  • Nichole

    Hi, I’m Nichole. 26 years old and was diagnosed with Chiari Malformation. My family is super supportive and always willing to lend a hand which I am so thankful for. But it’s starting to take over my every day living. I have 2 young children and a husband and don’t want to let them down. The pain is so unbearable lately.

  • That is sooo true

  • Taylor Y.r

    Thank you

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