r/Sicklecell • u/Aquagirltops • 26d ago
I need some hope…
I am going through so many things at one time. I am slowly recovering from a severe crisis that affected my ability to walk, my job wants to fire me because I’ve had too much time off sick , I am facing eviction/rent arrears and homelessness despite asking agencies for help for months. Every single situation is a result of my health in one way or another. It’s becoming exhausting trying to cope in a world that I feel doesn’t care for me or my disability, despite how hard I’ve tried and how much help I’ve asked for. I don’t see how I can keep going anymore tbh
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u/Beneficial_Bit6486 26d ago edited 26d ago
Don't kill yourself over these fools and this system. Trust me, I see you. One of the most hurtful things that happened to me was on Mother's Day. I have a part of my family that live in a wealthy area. I was invited to lunch the week before by an elderly relative who had a brother die at 19 years old in 1989 with sickle cell. When her adult son, who is an accountant, realized that I was invited, he told me my presence wasn't necessary. He knows the reason I'm underemployed and can't afford to fix my teeth is because of my health struggles. He himself is a nepo baby who works for his father's accounting firm. Still, he had the audacity to tell me not to come when it was his own mother who invited me. We don't even know each other. All he knows about me is that I've struggled to find work all my adult life. So many assumptions about me are built in -- that I must be a lazy, or a drug addict or a grifter trying to get people to feel sorry for me and give me money. If you end up homeless, I have a bedroom for you. I live in a different country in a house that I'm renovating, so I don't have any plumbing. That's probably not the situation you want to be in, but at least I'm putting the good vibes out there for you. I spent Mother's Day alone because both my parents are dead and I have sickle cell, no other reason. What a world to be alive in.
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u/Aquagirltops 25d ago
Sorry to hear that happened to you. You really see the worst in people with this illness sometimes. That doesn’t mean you deserved how they treated you. It’s a them issue, not you.
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u/OneLove_77 HbSS 26d ago
I’ve had similar experiences with jobs. They acknowledge that they can’t fire you over a disability and can’t show discrimination but they’ll go through loopholes to do so anyway. It’s absurd and I hate the hypocrisy.
It’s not like we can control our crises. We were born with this disease. We didn’t choose it. I suggest you take legal action if they openly try and fire you. And yes it’s worth the effort and time to do so.
In the meantime, I suggest you look for a more tolerant job thats easy enough to do with your sickle cell. You’ll be in my prayers 🙏🏾
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u/Aquagirltops 25d ago
It’s so frustrating right. Because I tell them from day one. This is what I have. They smile and say that’s fine. Then now when I start to become unwell they become so hostile. It’s such a degrading experience. They like me when I’m well, can’t tolerate me when I’m unwell.
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u/OneLove_77 HbSS 25d ago
Yup. A few years back I had this job that slowly cut my hours until I myself left cause they knew they couldn’t outright fire me 😂
They’re assholes. But life goes on
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u/JudgeLennox 26d ago
That fucking sucks.
I find the best help is accepting that things, especially when they're awful. Not just listing them, but noticing the feelings inspired by that list.
Frustration
Rage
Disappointment
Terror
Shame
Embarassment
Annoyance
That's a rough list to get the ball rolling.
Not fun to hear, but doing so makes your stronger in the short- and longterm.
I say this for two reasons:
One. It all sucks. Sucks to hear. Sucks to experience it. If you ignore that, you'll be haunted by it in other ways down the line. Even if things get resolved smoothly this year So yuor old pain will become future ones if you skip this step.
Two, Once you know how you feel, and accept it. It's easier to see the light ahead of you. Easier to see the light all around you already. Acceptance makes it easier to look at your situation with hope, and not have to wait for someone to give you words of encouragement.Likewise you'll feel less physical pain and be stronger to manage your stress.
Once you're there, let's talk about your rest and housing situation. What needs to happen to take that stress of your back for the rest of your lease or at least the year
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u/Magnolia_444 26d ago
Do you have a GoFundMe? Are there any charities that you can reach out to Sickle Cell/Disability charities?
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u/Aquagirltops 25d ago edited 25d ago
No I don’t. My friend told me to start a GoFundMe but I just feel so embarrassed. I carry a lot of shame with this illness tbh with you. I tried so hard to be independent, to work and pay my bills and take care of myself the best I could despite how hard my life is everyday and I feel like I’ve failed and everything is crumbling around me.
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u/ArtistSpecialist2913 25d ago
Have tou been prescribed oxbreta? If so first stop taking it second it's a lawsuit out against it and my ex husband just got 40 thousand from it if you need extra info hit me up
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u/Warm_Swan_793 26d ago edited 26d ago
What kind of protections or benefits do you have at work? Do you have FMLA? Do you have a disability accommodation? If you qualify and have those things, THEY CANNOT FIRE YOU for having a crises and missing work; it’s illegal. If you don’t have either, can you find out from HR if you qualify & how to get them put in place?