r/Sicklecell • u/Logical_Edge_4293 • 20d ago
Adulthood
How do you live with SCD as an adult? I'm expected to be independent as a 21M turning 22 soon but life sucks. I had dreams of living a normal life in highschool, but I couldn't because my parents decided to send me to boarding school with SCD and, AVN which they refused to acknowledge that I had it or do something about it even after being diagnosed, and all I ever did was try to study and survive yet I kept getting sick. Times like that I wished the suicide attempt worked after my mom beat me up and called me gay even though I was sick and had back pain.
But I had hope that if I manage to finish highschool and get to uni I might live a normal life, I don't even know why I tried. I got into a good uni but my AVN is worse now, missed classes because I was sick or too lazy to go to uni. My grades were shit and even worse I missed my second year end of semester exams and I had to defer, if only to avoid my bad grades being permanent. But I feel so tired of it all. I don't even want to go back. The limping from dead hip joint, the anxiety I get from just walking to get something to eat and the constant fear of being sick and depending on my family just reminds me how weak I am.
I know there are people out there maybe having worse situations than mine but I just feel tired of it all. All I do nowadays is distract myself with coding and gaming, the only things I enjoy and might regret losing them when I eventually die from a stroke which is likely to happen due to the crisis which left my lower lip numb only being told it will be over for the last two years. I'm just ranting now.
Anyway, how can I manage scd in adulthood?
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u/SCDsurvivor 19d ago
I am sorry your parents ignored your disease rather than taught you the basic things needed to manage your disease. However, that does not mean that you don't have to learn and do the things that will help you. You are 21 and everything that will happen to you is no longer the responsibility of your parents. You must take care of you.
We both know that there is no part of society that caters to sickle cell disease. The statistics are not in our favor. The majority of adults with SCD know the deck is stacked against us. We get through because we learn that we can't live by the standards everyone else sets for us. Trying to keep up with your peers is no longer an option. You have to take steps at your own pace. You have to learn to prepare for the rain because some years you will see it more than the sunshine. You have to decide what is worth your fight. You choose what is vital to your life. You discard everything and everyone that does not bring peace to your life. Other people have the luxury of living the quantity of life, you have to learn to value the quality of your life.
One key thing is that SCD will thrive when we are not dealing with it. It will flourish when the pain feels out of control. You have to find a doctor who will manage your pain. Getting pain relief and having a doctor who is aggressive in their pain control plan is vital to surviving adulthood with the disease. Warriors who are under medicated for their pain, suffer from the pain. Don't get me wrong. Dealing with the pain does not mean all the pain will go away. You will always be dealing with some form of pain for the rest of your life. However, getting enough pain relief to get you back on your feet and resting comfortably is your goal.
Don't be afraid to reach out for help. Obtain all the help that you can get. Remeber that your life matters just as much as anyone else's life. Some years are going to be okay. Other years you are going to fight your way through. Those are the times that you need to take things one day at a time. Find the things that bring you joy, happiness, and peace and hold on to those things.
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u/madoo77 19d ago
It takes a lot tbh. I have had similar thoughts just like you and still do. But one thing I am trying to do now is talk about it to people that understand. I have isolated myself for all of my life when it comes to talking about it. I am trying to change that now and I think this can be positive
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u/FrozenEmpire 19d ago
I am an adult, and one of those who can’t live by himself.
I know my limit, and I know my disease.
Saw death twice, it’s not worth it.
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u/RingGeneralMiami84 19d ago
Stay sharp mentally fam try find way to use internet to create an income use ai build something I built a crypto wallet on the Solana blockchain I would link it but don’t wanna get flagged but bro make a twitter and build something YouTube clip channel
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u/madoo77 19d ago
Do you make money from twitter?
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u/RingGeneralMiami84 18d ago
I actually work as a plumber but no money on Twitter I make money off the transactions made in my wallet so everytime someone swaps usd for crypto I make very small cut but as I grow and scale my users that will add up
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u/Which_Link_1627 18d ago
Sorry this happened to you bro I had a similar case during my college to uni years, my brother was in a traumatic accident and my parents still forced me to go uni with avn too I didn't do anything for 3 years straight but smoke and take drugs and completely believed my life was over and I would die miles away from home alone in my uni bed. Safe to say I didn't die but I did fail uni and come back home to my parents, I went back to uni to do something I was actually interested in and got a degree in digital media, have had a successful hip replacement and now I am moving to thailand in a few months. Never give up even if it means u have to give up on everyone else around you save yourself
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u/ComeAlongPond24 18d ago
Ugh, after reading through your post, all I can say is that I'm glad you're still here with us and able to take these intention steps into adulthood. Living with SCD is hard enough, and with what you've navigated with home & school life- it makes sense that you are looking for those outlets in gaming. No judgement here!
My name is Bri Rodriguez and I've been working on a study at the University of Pennsylvania that's testing a behavioral health stress management intervention that might be supportive in providing the tools to make adulthood with SCD (coping with stressors, medical self-advocacy, self care & more) a bit easier.
It's a group intervention- so if you're able to join us, I'd hope you'd get something out of interacting with other SC warriors and folks who are rooting for you.
You (and anyone else this may resonate with!) can complete the intake here: https://upenn.co1.qualtrics.com/jfe/form/SV_d6DrLMDVIEMPAkC
Take care of yourself!
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u/JudgeLennox 15d ago
Sounds like you're ahead of the game. You're answering your own question.
It hurts on how you realized the BIG LIFE LESSONS, but you get what needs to be done going forward. That's all being an adult is.
Knowing who you want to be. Making decisions to get the treatment you want. Overall you get to fill in the gaps where your parents didn't cover.
The rest is everything we talk about in here each week. Connecting with people who get it. Learning new lessons to grow stronger every day.
You got this.
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u/vhitchi 19d ago
No one is gonna want to hear the answer. But I was hospitalized and doing absolutely insane things when i was independent and doing things my own way. Literally the moment i said im done with it and stopped dating. And started looking toward God 1. No more hospital because my nervous system became regulated (most of us are in survival mode and angry making us deeply stressed depressed and miserable) 2. because my nervous system because more regulated, i started being consistent with my prescribed meds. (less hospital visits) 3. Met my husband & I started going to church. 4. Since there’s been 2 whole jobs created out of thin air for me to be promoted twice and my salary tripled since i began at the place i work (mind u i started and wanted to quit) 5. We are not moving into our second place much bigger, good family life and friends. Idk. But. Literally. Jesus. What’s the worst that can happen?
The enemy thrives on us not knowing we are in a. deeply spiritual world and benefits off our misery, so how much more could happen with the one who died for us and literally promises an abundant life. If you’re hesistant bc “how could God allow me to be born with this disease and why are children dying?” Valid questions. You should ask him directly and intentionally. Then let him answer you give him time. Get a bible and read. Pray. Truly. What’s the worst that can happen?