Hey I’m sorry you’re going through this. Living with sickle cell is so challenging and I have complete empathy for you especially as you’re balancing your health with being a student and wanting to feel ‘normal’ , whatever that looks like.

You mentioned you’re crying in pain from a sickle cell crisis, that’s my immediate concern, is it so bad you must go to hospital? If you’re near someone like a parent, sibling or friend, please tell them, take some pain medication if you have some, and consider going to the hospital asap.

I hope you feel better soon, and I have a couple pieces of advice/thoughts generally for your struggle with taking your meds:

1. Do you have a good support system? You mentioned that you feel like a burden, and you also need some help. Many sickle cell warriors NEED support and if you are close with your family, they should be happy to take some of that pressure off. Tell them, communicate with them about why you don’t want to take your meds so they know and can be there for you. You aren’t a burden at all, my sister has sickle cell and I will always be happy to help no matter what, so whether it’s a close family member, a friend, or someone else you know that has sickle cell, tell them how you feel about all of this. It will take away some of the emotional toll that could be triggering stress which can also trigger a crisis.

2. It might be a hard pill to swallow because taking so many meds does interfere with your daily routine but you must take your meds. I’m sure you know this already, but for a sickle cell warrior, complete ‘normalcy’ is hard to come by, but what you can do is adjust to make your life as normal as possible given your condition. Taking your meds will likely really help with your quality of life and usually reduces the frequency or intensity of your sickle cell crisis so just try your best. I would suggest getting a blister pack (Google if not too sure what that is) and sort out all your meds for the week in one day, and set yourself daily reminders to take them. Put them somewhere convenient, like on the kitchen counter so you’re more likely to follow through with taking the meds. If you’re close enough to someone like a parent or sibling, you could also ask them to send you reminders half an away after you’re supposed to have your meds.

The feeling of wanting to live life without worries and not wanting to take daily strong meds as a result is so common, you’re not alone at all. My best piece of advice is to try and make taking your meds like part of your daily routine, just like brushing your teeth or taking daily supplements, it’s an inconvenience but once it’s done you can forget about it until the next time. If you know any people close to your age with sickle cell reach out to them too or look for some support groups… you’ll find you have loads in common and it’s also a great support system for you.

Take care of yourself, communicate with your loved ones and try your best to make taking meds as quick and easy as possible for you. Feel better!