Join the Conversation on
6.6K people
0 stories
812 posts
  • About Scoliosis
  • Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in Scoliosis
    Community Voices

    A story not often told…or I have not found.

    Last week my younger sister was put on a Ventilator, along with Chest Tubes and Feeding Tube. She is in her 50’s and has been a smoker her whole life. She did not take care of herself, hadn’t seen a doctor in decades, didn’t eat properly and self medicated for years. At this stage of her lung disease, her prognosis is poor. What makes this worse, is It hasn’t even been a year since the death of another younger sibling. Of my remaining family, I see have one sibling struggling with Mental Illness, one who almost died from a Hypertensive Crisis due to untreated High Blood Pressure and another who was born with severe scoliosis as well as many features akin to Achondroplasia.
    The differences in the manifestations of our CPTSD are as varied as the differences in how we learned to cope/survive as children and ultimately as adults.
    So little is written about the history of our lives, from a family system perspective.
    How so many of the choices we made, were not from a thoughtful place (Frontal Cortex) but, from the Amygdala, a place of “fight or flight.”
    How a childhood history of violence and abuse can result in life limiting diseases.
    Some literature speaks to how people who have experienced trauma as a child, are more at risk for Heart Disease, Diabetes, additions…etc. However, these studies do not reflect the whole picture, that involves the family. Studies do not address the feelings of sadness and helplessness, that come from witnessing a sibling’s struggles, chronic illness and death. How sometimes being around each other in our attempt to comfort and support can be triggering because of the shared experiences as children.
    My heartache is tinged with anger that my beautiful siblings, the ones I love so, the ones I tried to protect as children, when I was a child myself, didn’t have the lives they deserved. No one truly understands how difficult it is to caste off the shroud of abuse. To be free of shame, fear and self doubt…unless you’ve been there yourself.
    I know I’m at a dark place right now. One filled with anticipatory grief and anger. It is a place I worked so hard to reconcile through out the years but, it is where I know I need to be and not where I will stay.
    There needs to be more written about our roles within the family as well as the family’s role in us. Especially, as it pertains to a family history of violence and abuse. This too pertains to whether you were an only child or one of several.
    I can’t help wonder how many of you have faced or are facing the same losses or challenges.
    Before I finish, thank you for giving me this opportunity to share and process further. If I’ve said or shared anything that can lead to misunderstanding, I am sorry. This is what’s true for me, or where I am at in my pain, just at this moment.

    4 people are talking about this
    Community Voices

    × " Feeling Extremely Exhausted Tired & Overworked My Mental And Physical Health Are On The Tipping Point.. " × #WhyCan 'tPeopleJustDoThierJob's.

    × " I'm Starting To Really Hate Work Sometime's It's Ok... But In Reality People Just Don't Like Working Anymore More And The Ongoing Stimulus $ Is What's The Issue... Companie's Need To STOP Being Cheap Give Actually Better Living Wage's.. So That You Could Actaully Keep Your Employee's... Come Up With Good Package's When Hiring.. And Stop Taking The Retirement Package's Away.. Do Better... Nobody Will Work For Any Company Right Now Because Of How Management Treat's Employee's... Like Disposable Replacement Trash.. I'm Honestly Sick And Tired Of Picking Up Everyone's Lazyness Slack.. It's Hard On My Body.. To Be Doing Alot Of Heavey Lifting Etc.. It Take's 2 Day's For Me To Recover From My Pain.. I Can't Shower Or Get Out Of Bed.. I Drag Myself To Go Fix Food Etc.. And People Get Mad At Me For Calling In... " EXCUSE ME!".. When I'm At My Job I Put My Head Down And Work... I Don't Talk To Anyone Because It's A Time Consuming Distraction For Me... I Only Look At My Phone For The Time.. Because I Over Stay Working.. My Job Is Extremely Tasking.. I Do Alot Because Of Other People Who Think That They Are Supposed To Only Do One Job... Not True.. When I Was Hired I Was Told To Do Everything... Even Though I Hate The Register And Talking To People Because They Activate My Anxiety Is Badly.. But I Do It Anyway's And Sux It Up... And Get It Done.. My Pain Level's Are Not A Joke 8-9.. Going On 10+ Then I Need To Go To The E.R... If I Do Get To The Point Where I Can No Longer Walk On My Own... Having Cerebral Palsy And Scoliosis Are Another Full-Time Job... Along With My Mental Health.. So Basically I Litterly Have 3 Full-Time Job's...I'm Just Soo Drained Right Now And In Pain... " × #chronic Pain#Depression #Anxiety #MentalHealth ☆▪︎☆ SKADI ☆▪︎☆

    24 people are talking about this
    Community Voices

    The Raincoat by Ada Limón

    <p>The Raincoat by Ada Limón</p>
    2 people are talking about this
    Community Voices

    This is the first time I have heard of this, I'm wondering if all my physical ailments might be a cluster of this and not because my mom had the flu

    When pregnant with me. Born with dislocated hip, 2 months old surgery lower body cast metal leg braces, scoliosis at 10, clutzy my entire life. Broke my tibia and fibia walking at 16, compressed discs, arthritis, I rarely make it a full week without hurting myself.

    Community Voices

    I'm new here!

    Hi, my name is NisabaLazuli. I'm here because I have Classic type Ehlers- Danlos Syndrome (COL1A1),and was recently dx'ed with degenerative scoliosis too.Looking for a supportive community to be a part of...

    Community Voices
    Community Voices

    Learning to Love Myself as a Person Living with a Congenital Deformity

    I live life with a congenital deformity. I was born with all four fingers, except the thumb, fused together on my left hand (known as syndactyly). I had corrective surgery when I was about one years old to separate them and increase my mobility.

    While living with a congenital deformity doesn’t define me and it’s not something that greatly affects my physical health or my ability to do daily tasks (I've learned to adapt where I need to), it’s painful to think back to the times I thought my condition made me ugly and less than rather than being a gift. It's emotional thinking of the times I was made fun of, was constantly stared at or heard whispers behind and in front of my face rather than being asked questions that I knew were simply out of curiosity. It didn’t just happen as a child in school or in social settings, but as an adult in corporate America, as a patient getting a routine check-up, or hanging out with a friend.

    For many years, I silently struggled mentally and with my body image. I felt feelings of shame, insecurity, and self-doubt. I pulled my sleeves down, stuck my hand in my pocket or always held something to mask what was a part of me because I wasn't comfortable with the way I looked. I played it off that I was fine even though I was emotionally hurt and mentally exhausted on the inside from feeling alone and different yet I didn't vocalize my pain often enough to seek resources and help to cope with my struggles. Seeing my sisters or friends happily ride their bikes while I "chose" to walk knowing that I can't reach or grip the brake lever to stop a bike without crashing (which happened many times!) made me sad.

    I had moments where I questioned my faith and had negative thoughts running through my head… “Why me? Why couldn’t I be normal? Why did I have to go through this? Why was I made like this?” When my mind swirled with those questions on top of: 1) Being an African American; 2) A female; 3a) A triplet AND 3b) the only one of us with this/any deformity; and 4) Never meeting someone in person with syndactyly or all of the above, it all hit me on an even deeper level. As a person of faith, I know God knows I could handle everything I went through and will continue to experience, but that was hard to see when I mentally wasn’t in the right frame of mind.

    It wasn’t until recently that I was doing more research and came across a rare disease called Poland Syndrome. Poland Syndrome can vary drastically from one person to the next in how it represents itself, but typical symptoms include underdevelopment or the absence of the pectoral muscles on one side of the chest, abnormalities in the hand and arm on the same side, and, sometimes, rib and spinal issues. This got me thinking… Do I have Poland Syndrome? I have uneven breasts, a concave chest (as told by a former PCP), syndactyly on my left hand, and I was diagnosed with scoliosis in my pre-teens. My mind was blown.

    I spent hours researching to learn more about Poland Syndrome. This was something new that I’ve never heard of before and none of my PCPs has ever mentioned it as a possibility knowing my medical history. I came across many studies and research articles, pages on reputable sites with resources for children, and information about reconstructive surgery at medical centers. What largely still seems to be lacking are resources for adults and general recognition and support needed for those with this rare condition. As someone working in the healthcare sector, this also translates into a gap in the healthcare industry of providers not knowing about Poland Syndrome to provide a timely diagnosis.

    Without a confirmed diagnosis yet, which could take months if not years, I’m taking it on myself to self-advocate and learn more about Poland Syndrome and how I can educate others and healthcare providers and professionals about this rare condition. I’ve already joined an online community that supports sharing stories about living with Poland Syndrome and what they’ve experienced or has helped them, which has been comforting knowing that there are people out there that I can relate to in some way.

    It’s been an ongoing process to make peace with something that society portrays is not “beautiful,” but choosing to love myself and practicing self-care was the best decision/game changer for me. My biggest realization was to be kind and accept myself because God accepts me the way I am. I’m worthy of self love and love from others…of respect and kindness…of inclusion and not judgment…of being my authentic self and not apologizing for it. Every day, I’m working on actively choosing to celebrate my differences personally even if I don’t make them as outwardly known, and to prioritize my mental health over what others may think or say about me. Changing my mindset has helped me to lean more into that growing confidence that I can have about myself. Looking back, the perception I used to have of myself was so skewed. I wish I didn't spend time believing I wasn’t good enough. My physical differences don’t define my successes and failures in life.

    Now, I don’t feel the need to hide myself. It’s ok to look and be different. Cheers to all of us for embracing our uniqueness and making the world a kinder place because of it.

    4 people are talking about this
    Community Voices

    × " Sigh... It's Really Annoying Having Depression..P.T.S.D..Anxiety.. Social Anxiety Disorder..

    × " My Main 2 Are Visable And Painful.. Being Born With #cerebral Palsy #Scoliosis . Are Costly To Maintain. And Now My Mental Health One's.. Are Draining.. Too At Work When My Male Co-worker's Pass By Me.. My Hypervigilence's Are Turned On... And I Get Jumpy And Have Panic Attack's.. I Don't Like Being Touched At All Anymore... So It's Going To Be Hard For Me To Form Any Kind Of A Romantic Relationship.. I Have Been Single 2 Year's.. And I Might Remain This Way Which Is A Bummer.. I Wish People To Understand Me.. Yes I Need To See A Therapist Eventually... But I Have Massive TRUST ISSUE'S.. And I Understand That One Day Some Guy Will End Up Loving Me For Me... But Right Now.. I'm At A Stand Offish Mode.. I Can't Let Someone In.. And With All Of These Viruse's... How Can Anyone Go On A Date... I'm Like At The Point Where That's Doesn't Matter To Me Anymore... I Love Being Single... Because I Don't Have To Worry About Someone Else.. And Stress Out.. My Last Realtionship Was Co-Dependant.. And I Wasn't Made A 1st Priority... I Felt Like A 3rd Wheel. I'm Happy To Have Experienced Being Married.. But It's Just Not For Me.. And Also I Physically Can't Have Anymore Kids.. It's To Dangerous For Me To Carry And Have One.. These Are My True Reason's.. Please Respect Them... " × Sincerly, ☆▪︎☆ S.K. ☆▪︎☆

    7 people are talking about this
    Community Voices
    Community Voices

    I’m new here!

    Hi, I’m new here, I’m Samantha from RareResilience where I share my journey with chronic and rare conditions, my fight for survival & justice and I also advocate for others in similar circumstances. I’m a senior psychotherapist and Psychology major, with additional training in healthcare, SEN, functional medicine & nutrition.
    I’m here to meet likeminded people, to share my writing & journaling & to connect … connection is what we all need I think 💖💪🏼
    #MightyTogether #ehlers-DanlosSyndrome #Dysautonomia #Dystonia #PelvicOrganProlapse #TetheredSpinalCordSyndrome #Scoliosis #PTSD #complexpost-traumaticStressDisorder #Anxiety #Grief #RareDisease

    3 people are talking about this