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    Walking The Invisible Illness Line

    I’ve been bed-bound for the better part of three months now since I had a cardiac episode due to medication induced hyperthyroidism. I’m grateful I no longer need a wheelchair and can manage a 5 minute walk with the dogs and my husband in the evenings. But for the greater part of the day, I’m still stuck in bed.

    I’ve watched so many documentaries, movies, and TV shows. And as much as I enjoy reading, cognitively; it’s become a challenge to spend the whole day focussing on small type. I find audio books to be more akin to auditory noise rather than being enjoyable, so that rules these out. Which makes the discovery of downloadable learning TV apps something of a revelation.

    I recently downloaded Coursera and I’ve been learning about learning and memory, which is both interesting and useful—in that I have the gene for early onset Alzheimer’s disease. So keeping my brain challenged in doses I can manage, will hopefully help to stimulate my brain to keep creating healthy new neural connections. Next I’ll probably do some courses on mythology but it’s a comfort to know I have a way of keeping myself occupied in a way that is good for my brain health, and my mental health. Because all that free time can make my thoughts spiral at times—which I think is natural, and to be expected.

    We are creatures of habit, yes. But we all also want to feel like we are leading meaningful lives, and I think this is the cruelest part of being chronically ill.

    Whatever you enjoyed before gets taken away. Then come the doubters… the doctors, the comedians, the social commentators and painfully, family members, or so called friends—all eager to stick their claws into you when you are at your most vulnerable. And there’s only so many times you can hear the empty words “get better soon”, or “have you tried yoga or meditation” before it starts to erode away at your soul. The truth is I think there is no way to successfully walk the invisible line of trying to make the best of your lot, and convince people that you are also chronically ill.

    The line itself is so faint, as to be invisible to most.

    Society wants you “whole” or in hospital… there isn’t much room, or understanding, for anything in between. We have to learn to accommodate the grief that comes with being socially maligned, which is something I still struggle with almost every day, alongside having to advocate for myself to get assistance to manage my health. These burdens, social, mental, monetary, access to healthcare, loneliness, and more—are not challenges that any person should have to face alone.

    But if I have learned anything in life, it is that there is always power in knowledge. So while I continue to try and navigate the invisible illness line, I’ll be learning about myths and poetry, and continue to take comfort in other people’s autobiographical tales of misery. Because being chronically ill is a tragedy, and as the saying goes misery loves company.

    #MentalHealth #ChronicIllness #MyCondition #ChronicFatigue #InvisibleIllness #Thoughts #AlzheimersDisease #Grief #Loneliness #selfcare #Disability #InvisibleDisability #MyalgicEncephalomyelitis


    A Holiday Reflection of Grief

    Holidays are still a little hard even though my parents have been gone 11 years now. But usually on Thanksgiving Day we are cooking and eating with my husband’s family, and I’m busy with that and talking and laughing and don’t have extra time to miss my parents more. This year we weren’t able to see his family for the first time in a long time. Although, we are going to be able to go visit my mother-in-law and father-in-law tomorrow and eat with them. I’m excited about that.

    I also have a sprained thumb on my dominant hand so cooking even for just the two of us just wasn’t going to be plausible. So today my husband and I ate at Cracker Barrel. Very good, but definitely not the same.

    I will admit I cried a little this morning missing my parents. Missing the fact that I don’t have very much biological family left. No children, no siblings, no grandparents. I only knew one grandparent, and she passed away when I was 7. I have one wonderful aunt left and several cousins scattered around. But no close immediate family now. A lot of holidays especially in my teenage years, it was just my parents and me, before I met my husband and we joined families and spent the holidays together.

    The holidays, especially Thanksgiving and Easter, were my mom’s times to shine! If you didn’t know her or only knew her after her health started declining in my early teen years, then you didn’t know exactly how much of a 5’0″ fireball she was. My mom was one of 6 children, and I am the youngest of my cousins because even though mom was the 3rd oldest, I came along really late in life. So I wasn’t born yet and very young when Mom was still in good health.

    But I remember Mom and her siblings used to rotate hosting Thanksgiving when I was young. My mother was the best hostess I have ever known! She was at her happiest when she was feeding people and making them laugh. She did both those things extremely well. She also hosted an annual Easter Egg Hunt at our house for the entire community and family. It was such a success every year.

    So after I stopped crying, I looked far back in my memory to those good times. The times when she was doing what she did best, taking care of people and making people happy. I am thankful that even though I was young, I was able to see her laughing and smiling and running around trying to get someone to eat just one more serving of pie. Laughing and joking, even playing jokes on people! Because she went through a lot of pain and sickness for a good part of my life. Even then she always had a way to make the nurses and doctors laugh even when she was in extreme pain.

    Daddy’s holidays were Christmas and Valentine’s Day. He loved watching me and mom open presents, and he always got us both a heart-shaped box of chocolates every year for Valentine’s Day without fail. He was the opposite of Mom. 6’3″, friendly but very quiet. And oh, that smile and quiet chuckle could light up a room.

    So after reflecting on those things today, the happy and the sad, I just want to say to please be thankful for the family gatherings you attended today or will attend this weekend. I know it may get crazy and hectic when you have multiple family gatherings to arrange and travel for hours, and even multiple meals to eat on the same day.

    But I would be happy to have had 10 to go to today if it meant I had that much family to spend time with during this holiday. Soak up this time with your family. The turkey doesn’t have to be perfect. The pies don’t need to have perfect decorations. What matters is that quality time. I am so thankful for my husband, but it’s lonely when you’re alone in your biological family. Write down those precious recipes from your grandmother. Listen to your grandfather’s stories. Hug your parents extra hard. Joke with your siblings, play with your nieces and nephews. As tired as you are, take it all in and relish every minute.


    Shame, Envy, and Loneliness: The Triple Threat of Chronic Pain

    I’ve been here before, this hollow even God cannot reach.

    I’ve sat in bed at night staring at the wall, wiping away tears that seemingly come out of nowhere. They fall sometimes over spilt milk, literally. Or a photo on social media of friends out to dinner. The dresses in my closet I don’t wear anymore. The empty house that creaks like my worn-out joints.

    It’s not the same loneliness that took over my spirit as a child and a young teen, when fear over my sexual orientation made it impossible for me to live without a mask that made it difficult to breathe. Without armor that made me walk with a stunted gait. Without weaponry that turned me into a cold-blooded monster.

    But this is loneliness, nonetheless, because chronic pain isolates. It dismembers. It shames.

    Once I exorcised my crippling anxiety regarding being queer as an adult, I never thought this type of humiliating loneliness would ever haunt me again. “I’ve tackled this,” I told myself throughout my mid- and late twenties. “I’ve moved on. I love myself.”

    Then my body turned into a guest who crashes your house and refuses to leave. The windows shuttered and fogged over. The doors locked, the key thrown away.

    I was quickly taken hostage, and it wasn’t long before the cruelty of hypermobility and Ehlers-Danlos syndrome turned me into wallpaper as I faded into the background of my own existence.

    Six years later, here I remain, a vague memory locked inside the mind of a dementia patient.

    Feeling lost to myself is one thing, but feeling forgotten by and lost to friends and family as a result of chronic isolation makes me feel more pathetic than a man with a cold. It vomits up the grotesque emotion of envy, that puss-filled zit that only spreads with each attempt at release.

    But denial is uglier, and the first step to healing is admission, and I can no longer pretend I don’t feel exactly that, even if shame comes along with the package and I have to face it — like I did while coming out — all over again.

    I have to admit that, yes, I am envious of couples who have a partner to lean on during the holidays. I am envious of friends who seem to be just fine without me. I am envious of colleagues achieving professional milestones I used to dream of. I am envious of people who don’t wake up every day dreading the mundane acts of living.

    Some of those folks walking past my secluded hut and peering inside might say I have no one to blame but myself for my isolation, and maybe they’re right. But I’ve endured enough self-loathing to know it’s no cure. It is a disease that only brings further dis-ease.

    Yet isn’t that exactly what this is? Hulking, drowning, debilitating, humiliating. Shame and self-loathing are just two sides of the same rusty coin.

    I used to pride myself in being independent. I was always good at being alone. In many ways, it is still my preference, but only when I have a choice.

    My chronic pain has left me without the ability to make decisions in relation to nearly every aspect of my life — when and if I shower, what and if I eat, where and when I work — including socializing and romance.

    Knowing I desire connection and comfort but have very little of it to give back results in deep embarrassment, like when you’re so hungry your stomach growls louder than a hurricane wind and everyone hears it.

    “I’m fine,” you say, laughing through the reddening of your face. “I just need lunch.”

    But lunch is a buffet line that requires a ticket you cannot afford and mobility that was lost, like your social circle, long ago.

    Good thing there’s takeout, though the food is cold by the time it arrives, and there’s no one around to split dessert.

    Nights like these I tell myself that Jesus Christ scorned the shame of the cross, so I, too, should scorn the shame of my chronic pain. I should look at my scars and know they have no power. I should be grateful that my body, bruised and broken as it may be, still functions at all.

    I’m not there yet. I am still on my knees, glancing upward, waiting for my strength to arrive.

    But I’ve been here before, this hollow even God cannot reach. And I know there is light, somewhere, up above.


    New here

    I’m a middle aged woman becoming isolated and lonely even though I’m generally considered quite interesting & kind. I do suffer from depression. I’m from Toronto & need some new friends.


    Lack of Life Experiences with a Disability

    Dealing with fears and insecurities is a tough thing to have to deal with in life.  Add a disability to the mix and it can be a very complicated problem. I have spent most of my life feeling insecure and lonely because of my disability . Having a physical disability is something that I wished for most of my life would just disappear. Unfortunately, It is part of who I am. I have learned over time that this is something that makes me quirky and different.

    I have let my fears and insecurities eat me up inside because I have never felt completely to be myself. I have never felt pretty enough,  smart enough, tall enough, etc .. the list can go on and on.

    I’m hoping that I can get to a point in my life where I can just be ok with who I am with all of my imperfections and scars. My Insecurities surrounding my disability have delegated my path in life . I feel that I have had opportunities to date but I let my fears of inadequacy get in the way of my potential happiness.

    Having a physical disability has played a part in the negative self-loathing that I have felt for most of my life. I have let the fear of being rejected or the fear of not being good enough take over my life.

    My number one fear in life is that my lack of life experiences will have an effect on my future and potential relationships .

    I feel that women my age have experienced so much more in life , I just feel that I could never measure up. Will my lack of life experience have a negative effect on my future relationships? I feel like i’m a adolescent trying to match up to my adult emotions.


    Job Search Woes #depressed # Autistic Employment #Loneliness #Employment

    #Job Search Woes
    Anyone else trying and failing to find reasonable paying employment. . I have put out literally hundreds of job applications. . I do all the "right" things that I was taught you do. The questionnaires, the panel interviews, the follow up thank you letters. Tell them I'm Autistic, don't tell them I'm Autistic. Everytime it seems all is going wonderful. You even see your work area if hired sometimes . Yet everytime I'm either ghosted or they let me know they've chosen someone else. I did mock interviews in a actual class that was supposed to teach you all this and I did well in these. I just give up it's a mystery I apparently can't fathom. Anyone else going through this? It's so isolating.


    I'm new here!

    Hi, my name is Ash07. I'm looking for support to combat loneliness

    #MightyTogether #Anxiety


    hi fibro friends!

    i’m Azariah. i am 21 years-old, and i was diagnosed with fibro about two months ago. while it was nice to have an answer, i still feel no different since they have no plan for me. i’m now working half my hours from home, signing up for online classes, and fighting having to go on disability. i’m trying to stay strong, but it’s a lonely world out here and i’m sick of feeling pain every waking moment. though i am crying as a write this, i’m not giving up hope. i hope that being a part of this group helps. #Fibromyalgia #ChronicPain #ChronicFatigue


    I’m new here!

    hi i’m just a lonely lesbian with fibro and about a billion other things. hoping this will lift my spirits
    #MightyTogether #Anxiety #BipolarDisorder #Migraine #Fibromyalgia #EatingDisorder #OCD #Grief


    Mental Illness & Loneliness

    True when you have the right mental illness life can become very lonely mainly because no one wants to be around you due to your moods or limitations. No one wants to be alone all the time. So posting on the mighty is a great way to receive an interaction with another human being