Cyclic Neutropenia

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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

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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

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