Cyclic Neutropenia

Join the Conversation on
Cyclic Neutropenia
139 people
0 stories
5 posts
  • About Cyclic Neutropenia
  • Explore Our Newsletters
  • What's New in Cyclic Neutropenia
    See full photo

    Contact dermatitis?

    Well, this peeling of my fingertips continue. It feels like the entire thumb pad has died- like an orange skin that has rotted, and hardened into leather. No itching, no burning, just terrible throbbing pain. At my wits end. #Dermatitis #CyclicNeutropenia #Fibromyalgia

    See full photo

    𝔻𝕠𝕔𝕦𝕞𝕖𝕟𝕥 𝕪𝕠𝕦𝕣𝕤𝕖𝕝𝕗 𝕒𝕟𝕕 𝕠𝕥𝕙𝕖𝕣𝕤 # #

    #Depression #CyclicNeutropenia


    Why I should have left sooner

    On February 9th, my husband left for a week on an international trip with a colleague. The timing couldn’t have been worse. I have cyclic neutropenia, and after my white blood count dropped to dangerously low levels this past winter, I followed the news on SARS-Cov-2 with an understanding from the start that I was at a higher risk than most people. I also had a lower level of fear than most people who were aware of the threat, because I’ve looked death in the face dozens of times since I was a teenager.

    The biggest threat to my well-being right now isn’t an illness. It’s my marriage.

    My biggest wish, after almost nine years of asking my husband to treat me with the dignity and respect that every human being deserves, isn’t for him to soothe me with more promises and sugar-coated lies. All I want is for him to leave. Because after years of indifference towards me that began right after the birth of our son, I don’t harbor any delusions of becoming suddenly interesting to him. I married a fictional persona that he created in order to achieve the milestones of marriage and parenthood, in the service of building his persona, his mask, his outward image. A shell. A painted shell where he imprisoned me for years. But seen from the outside, it’s lovely. “You must be so happy together,” everyone says. And I fight back tears of shame and rage.

    I am a highly creative, gifted professional, and I’m living with a manipulative, unloving spouse in the age of SARS-Cov-2 lockdowns worldwide. I don’t really want to make excuses for myself, but there are many reasons why I procrastinated getting a divorce. My chronic, complex, invisible illness, my son’s special needs, being an expat living in my husband’s country, his not so credible threats to strip me of everything should I ask for a divorce. My habit of believing in others’ ability to change. My worry that my family of origin will be disappointed in me. My hope that once he finally fell in love with another woman, he’d leave of his own accord. You see, there are situations where proactively seeking a divorce may be the only responsible course of action.

    I work in the nutritional therapy field and thus in a service profession. I take care of others day in and day out. I’m so strong and resilient that my best friend used to write letters to me addressing me as “my dear, indestructible Sara” –and yet I live in the silent and invisible burden of a deeply toxic relationship to a manipulative man, who on the surface looks so great that he’s even fooled me multiple times along the way.

    I was greatly struggling to breathe starting in early February, and was surviving on a cocktail of pneumonia medications, alongside oral, inhaled, and nebulized steroids in doses high enough to knock out whatever immune function may have been left. None of this mattered to my husband on the eve of his trip. What mattered was trotting around the globe, rubbing shoulders with important people, and getting a piece of his colleague’s ass.

    I noticed last October that my husband was carrying on some kind of an affair with another woman. He was working with enormous passion on a volunteer project for his company, and was neglecting his responsibilities at home. He was ignoring me and our son, and complained constantly about how “labor intensive” our daily life activities were. When our house got cold, I took over chopping the wood. He was irritable and distracted, taking calls late at night and sometimes carrying his colleague’s credit card with him in his wallet, or logging into her email, always, of course, because of their joint project.

    But an attentive wife almost always knows when her husband is chasing after another woman. And she almost always knows when she’s being lied to. It was only two days before he left on his trip that he broke down and said, “Yes, I admit it. I’m very attracted to her.” He told me he’d been attracted to her for many months and that he wasn’t sure whether or not their relationship would grow into something sexual. When he went to the pharmacy to fill my prescription, he bought a pack of condoms to take with him on his trip. Their trip. Which he paid for with money from our joint account. Without any prior warning to me.

    He left me at home, pitifully ill, to carry on with work and caring for our autistic son, while literally fighting for my life, literally struggling to breathe. He wrote me daily emails about his trip, the important contacts he was making, the lovely time he was having with his colleague. Only on day five of the trip did he ask me how I was feeling, as a sort of timid afterthought to yet another email that was all about him. He didn’t read or respond to my response, either.

    I won’t lie to you. I was hurt and jealous when I saw that he was emotionally and romantically involved with someone else. I was angry when I saw that he’d spent a lot of money from our joint account on their trip. And yet I was also relieved at his absence, as if a tight noose around my neck had been loosenened.

    While he was gone, I met with a lawyer, to find out how to file for separation and to get the process started. Because as much as I hoped that he’d never come back, I knew he probably would, at least temporarily. Because while he’s never cared much about me and I haven’t much mattered to him, I provide him with continuity and security. He benefited from my unwavering responsibility and fidelity. Our home is like the parking lot where he rests in between one adventure and the next. Our shared life has never been a relationship, let alone a marriage. It has been a hierarchy where his desires and his pleasure are more important than my dignity and survival, where his pursuit of gratification has distorted our son’s view of what it means to be a man.

    His return, on the evening of February 14th, was even more mortifying than his departure. He invited me to have pizza with him to celebrate Valentines’ Day together. Only it had been 10 years since we’d last celebrated Valentines’ Day, and he was now in love with another woman – not exactly something I wanted to celebrate with him.

    I set up an appointment for us to talk with the lawyer together. Only he told me couldn’t come, because he already had an appointment with his colleague.

    And before we could reschedule came the country-wide lockdown. We have been home together since then, and apparently his relationship with his colleague has fizzled out. There are no more late-night calls, and nobody will be planning any trips for a long time to come. The divorce and separations court hearings are all on hold, and the system is completely backed up.

    Please check in on your friends. Even, especially, the strong and resilient ones. Even, especially, the ones who seem to have a perfect marriage and a happy home.

    If you’re in a marriage with a manipulative spouse, leave as soon as you can. They won’t change. And they won’t leave you first, at least not fast enough.


    Youtubers with chronicillnesses and disabilities

    Youtubers with chronic illnesses or disabilities

    Polar Warriors | #BipolarDisorder

    ResetwithTerry | Graves Disease

    FranklyFranca | Graves Disease

    Emma Tara |

    Shaina Leis | Maladaptive Daydreaming

    Leah Dawn | ME, IBS, Emeraphobia & #Depression

    Crafting For Almost Everyone.

    Dodie – Depersonalisation Disorder

    Cara – Cerebal Palsy

    Sarah rose – #Fibromyalgia

    Life Of A Blind Girl – Retinopathy

    Fashioneyesta – #SeptoopticDysplasia

    Zoe’s Clan -EDS & co

    Serhat Eronal – #SpinalCordInjury

    Jessica Chelsey | #Lupus

    WheeledNomad | EDS & co

    Wheels2walking | Injured Paraplegic

    Able Family | Injured Paraplegic

    Jordan Bone| Injured Paraplegic

    Juliannado | Special Needs & Crohns

    Alma Guerrero | #SpinaBifida

    Fae System | Antisocial PersonalityDisoder & Bipolar

    BriaAndChrissy | OCD & PTSD

    Anna Campbell | Bipolar

    The Labryinth System | #DissociativeIdentityDisorder

    Crystal | Gastroparesis

    Liddy Alvarez | Fibromyalgia

    Kay Bre | Fibromyalgia

    The Life Of Me Smile Magee | Cancer, #Gastroparesis, Dysautonimia ETC

    Tayarra Smith | , Sherman’s Disease, #CyclicVomitingSyndrome & spine GI issues

    Grace Nicole | Schitzophrenia

    Rachel StarLive | Schitzophrenia

    Shane Dawson | Depression & Body Dysmorphic Diisorder

    Izzy MS | #MultipleSclerosis

    Chronically Lyss | #Arthritis

    Ellen Jones | Autism

    Kay Maynard | Autism

    MaxluvsMya | Autism

    Rhiannon Salmons | Autism

    The Aspie World | Autism

    Assistance Dog Adventures | Chronic Lyme

    Lemons N Lyme | Chronic Lyme

    Kim And Ross | Lyme, & ME

    Prisha Bathia | Sturge Weber Syndrome

    Lauryn Elizabeth | Hyperprolactinemia

    Shontelle Scott | Gastroparesis

    This Girl Audra | , IBS and OCD

    Gabrielle Ferguson |

    Krissy Mae Cagney | & Celiac

    Steadfast Soul |

    Brooke Houts | #Anxiety & Depression

    Nine and Vine | #BloodCancer

    Jpmetz | MS

    Invisible I | & Autism

    Ostomy Diaries | Crohn’s disease

    SarahWithStars | #ChronicPain

    Trisha Paytas | BPD & PID

    The Frey life | #CysticFibrosis

    Eyeliner and Empowerment | #CerebralPalsy

    Robyn Lambird | Cerebal Palsy

    But Ya Don’t Look Sick |

    Molly Burke | #RetinitisPigmentosa

    Painful Hilarity |

    Lucy Edwards | #Blindness

    Kelsey Darragh | #TrigeminalNeuralgia


    Themitowarrior | #MitochondrialDisease

    The Killen Clan????

    EMILIA VICTORIA |#Endometriosis

    Kelsey Morris |#HipDysplasia

    Holly Vlogs | Crohn’s Disease

    In The Lyme Life | Lyme Disease

    Kiki Chanel | #CyclicNeutropenia

    Hydrohayley | Hydroceohalus

    This Gathered Nest | Down’s syndrome

    Foolyliving | Autism

    I am still ME

    PerfectlyKnitBeauty| #NeuromyelitisOptica

    Channon Rose | , PTSD, , ADD, Endometriosis

    Ally hardesty | ADHD

    JD Dalton | #Albinism

    ASL Stew | Deaf

    WheelsNoHeels | Spinal Cord Injury

    Rikki Poynter | Deaf

    Kathryn Morgan |Hypothyroidism

    Pain Doctor | Chronic Pain

    CFS Health | ME/CFS

    Young Chronic Pain | Chronic Pain

    MultiplicityAndMe | Dissociative Identity Disorder

    Stephanka | #AplasticAnemia

    DisociDID | Dissociative Identity


    Alivia Marie |

    OhSoAdrianna |

    Amythest Schaber | Autism

    Invisible I | & Autism

    Sitting Pretty Lolo | ALS

    The Mandaville Sisters | One Handed


    You Look Okay To Me | #ChronicIllness

    Caito Potatoe | Autoimmune #KidneyDisease

    A Thousand Words | Adrenal Fatigue

    Living With Addison’s | Addison’s disease

    Madison Decambra | BPD

    KaraLou |

    The Dale Tribe | Type 1 #Diabetes

    Claire Wineland | Cystic Fibrosis

    Jessica Kellgren-Fozard | HMPP, MCTD & co

    Katie Scarlett Speaks | Chronic Pain

    Just A Skinny Boy | Autism

    Sasha Aimey | Endometriosis & Arthritis

    ALifeLearned | Mental Illness

    Hannah Witton | #UlcerativeColitis

    Georgina’s Journey | POTS & ME/

    AGirlWithLyme | Chronic Lyme

    Olga Chronics |

    Sam&Alyssa | Lupus

    ChronicallySaltyy | & co

    The Files | & co

    Arianna | , & co

    Zebra to Zebra | & co

    Chronically Jenni | & co

    Morgan Grant | & co

    Simply Hannah | , POTS & co

    Abby Sams | , CRPS & co

    Izzy kamblau | & co

    Rebellious Story | & co

    Christina Doherty | & co

    Not Your Average Zebra | & co

    Simon and Martina | & co

    Amy’s Life | & co

    Annie Elainey | & co

    Chronically Kimberly | & co

    Chronically Jaquie | , Mito & co

    Sophie’s Life | & co

    Life With Stripes | & co

    Jordan Bone | Spinal Cord Injury

    Rikki Poynter |Deaf

    IDrankTheSeaWater | Tourette’s & Mental Illness

    Angie and Ruby | Stromme Syndrome

    Josh Sundquist | Amputated Leg

    Anne Spicer | Crohns & gastroparesis

    Sleepy Santosha | Adrenal Insufficency

    Live Hope Lupus | & co

    Emma Blackery| ME

    Yoga My Bed & ME | ME

    Moly Christopher | /ME

    CFShealth | ME

    Bethxxx | ME

    Miss Adventure | ME & mental illnesses

    MegSays | ME

    Ann Twirls | Chronic Pain

    VlogBrothers | & Chronic pain

    Fibro Mom |

    Service Dog Vlogs |

    Chronic illness and disabilities

    The Vlogging Murrays | Preemie & Chronic pain

    Keira Rose | Dermotilonania, Anxiety,

    Beckie brown |


    Maya Imani | Schitzophrenia

    John Green |

    Savannah Brown | Eating Disorder, Anxiety &

    TrichJournal | Body Focused Repetitive Behaviour Disorder &

    Emily Rose |

    Bonitajunita | Trichotilonania

    Allie Malin | Trichotilomania

    TheMaddieBruce |

    Sammy Marie | &

    Madison Decambra |

    Tara Lou |

    Lace & Lashes | Crohns Disease

    Sally Boebelly |

    Crohn’s disease

    Ashley Jeneatte| Crohns Disease

    Abby Green Osteogenosis Imperfecta

    1 comment