r/Sicklecell • u/crazypierat • 13h ago
Support let it all out ig
!!HEAVY TOPICS AHEAD!!
Okay, so I came here a while ago talking about my parents, my father, and the addiction situation. Now Iām just here to let it out, I guess.
I grew up mostly ignoring my SC. Iād take my meds when I remembered, and play to my limit, which usually meant no playājust sitting, reading, or talking, maybe chasing friends for a bit. This was during my primary school years, up to age 12. Looking back, I realize Iāve always had memory and attention issues, and Iām starting to think I might be either ADHD or autistic. When it came to my illness, I never paid attention unless I was in pain. I sometimes chose not to research it, even though my stepmom encouraged me, because learning about SC never painted a happy picture. Those primary school days hold my first memories of feeling worthless and wanting not to exist, or just going through depression. My earliest memory was sitting in class when the teacher explained self-esteem and asked if we had itāI didnāt raise my hand at first, only doing so to avoid being called on. Another time, my stepmom gave me a letter to deliver to my teacher. Memory is tricky, so Iām not sure if she told me it was about me wetting the bed, or if I just thought thatās what it was about. I didnāt want to give it to the teacher, and later I think I threw it away. I remember crying at school that day because I was a bed-wetter, and every time it happened afterward, I felt deep shame. It didnāt take long for me to learn what suicide was; I often thought about it and even tried once or twice. One memory I keep revisiting is hiding a bottle of weedkiller behind the fridge at home because I wanted to die but didnāt want to leave. I kept it there for a day, thinking that if I ever decided to, I could just end it.I donāt remember my exact age during that story, but I was young. The point is, Iāve been struggling with depression for a while, and at this stage, if I were diagnosed as chronically depressed, it wouldnāt surprise me.
I remember throughout my life being under pressure to achieve, with my family always expecting high grades. I recall my father waking me up in high school and threatening to pull me from school if my grades kept slipping. Back in primary school, I was often called āthe scientist,ā and occasionally someone would say Iād bring prosperity in some wayāreal golden child treatment. My father once used this against me during a car ride, reminding me that people used to think I was a prodigy. After that day, I never referred to myself as smart again, and sometimes Iād even correct people when they said I was.
I think I developed moya moya in grade 10. I found out Iād had a stroke, and not fully grasping the seriousness, I thought that was it for me, my life was over. I became really depressed and basically stayed in my room for I think about three days before my dad came in and said something like, āYou canāt stay like this.ā He got me to start coming to his garage. Honestly, people are overrated.
I remember going to the garage without knowing why I was there, feeling disconnected from myself. One day, my father was chatting with one of his coworkers and said, "<coworker name>, I found someone lazier than you." I canāt recall if he pointed at me, gestured, or how I even came to know thisāwhether I overheard it or someone told me later. I just remember thinking, "But I just had a stroke, what do you expect from me?" Iāve noticed that people care, or pretend to care, only up to a point, and then itās like you stop matteringāthey only care about what you can provide. Either way, that moment marked the start of the latest chapter of my life.
When I started working at the shop, it was basically bullying every day. Theyād tease me about being lazy, and Iād go home with a pounding headache. My dad would drag me back, and Iād be confused about what had changed between him being a caring parent who understood his kid just had a stroke, and now essentially an employer trying to squeeze me dry. Over time, I learned to play the gameāif someone asked me to do something, Iād do it. I still got teased, but less, and sometimes Iād cuss, which led to reprimands (at my fatherās company). At that point, I didnāt hate my people; I didnāt even see any of this as unnatural because I used to think Black parenting was harsh (it took me a while to stop thinking like that). But playing the game came at a costāevery day Iād be in pain from working, so every day Iād take pain meds. Enter the era of bullshit.
All of the above is a simplified version, but hereās whatās new: my dad has developed a dislike for my use of painkillers, viewing it as an addiction. I disagree and think labeling it that way without evidence is dangerous, and now Iām dealing with the fallout. About three months ago, I woke up in pain. My stepmom and brother were ready to take me to the ER, but my father told them not to, which led to three hours of sickle cell crisis. Instead, my stepmom drove me around in the car rather than taking me to the hospital. They only took me there in the morning, maybe realizing they couldnāt leave me home alone like that. My stepmom said my dad once told her he wanted to see what would happen if they left me to handle it without meds, so maybe this stems from that. The whole situation left one of my arms completely useless for two weeks and made me deeply distrustful and resentful toward them. I keep things civil but have distanced myself even more than usual. Since my dad doesnāt want me taking pain meds, I just donāt go to work, which I feel has them acting differently. Earlier this week, I needed hydroxyurea, which costs money. I asked my father for it, but he went into a monologue and questioned me. I still bought the pain meds, but the whole situation weighs heavily on me, and I donāt like having to sneak around and lie to get them. My doctors at the sickle cell clinic suggest finding another job to work toward independence, but thatās not easy. I looked into call center jobs, but theyāre too far away, and other places either havenāt called back or have turned me down. The good thing is my YouTube channel is growing and healthy, with one person funding me and a friend deciding to help, but I still canāt relax. Iām just so tired of feeling scared and hate that almost every thought is about anxiety over my situation.
I really would like some advice, but honestly, just feeling heard would be a blessing right now. If you could just say something, Iād be thankful. Sometimes I feel like crying, but I think Iāve forgotten how to.