How My Medication Routine Rules My Life With Chronic Illness

I hate the thought of my illness ruling my life but the truth is: in some ways it does and always will. I always have to plan ahead with everything I want to do and I miss out on a lot of things because of how it affects my body. But the one thing that rules my life more than anything is my medication! It’s something that I don’t really talk about as I guess it’s just a given that I have to take medication, but it’s one thing that really gets to me! Why? Because it feels like all I ever do is take some form of medication! My whole day every day is controlled by when I need to take my medication and whether I have to eat or can’t eat with it, etc.

I did a little experiment and filmed myself taking my meds for a whole day. I ended up with 10 different videos!  A lot of the time, I’m taking multiple medications within this video as well! This includes three different meds for my Behçet’s disease, four pain meds, nerve meds, stomach protection, meds for anxiety and depression, three different types of laxatives, mouthwash to protect my throat from closing as I get older and vitamins/supplements. A lot of these are taken more than once throughout the day.

I did this to give people an insight into a typical day for me. No matter how hard I try to prevent my illness from ruling my life, I can’t get away from the fact that I have to follow my medication routine… every day! Sometimes I get so fed up and I get angry over the fact that I can’t just go to bed if I’m tired because I have a whole routine before I can even think about going to sleep. It’s the same when I wake up — I’d love to be able to get up without having to take a handful of meds before I even start my day. The thing that annoys me the most is that there’s no end… this is potentially and very likely what my life will look like from now on.

I know that they’re doing good and without them I’d be in a very bad way, but it doesn’t mean I can’t and don’t get frustrated with it — this isn’t “normal” and I do struggle. I know how important it is to take them and I’ve got into a really good routine, but it is hard! On top of that, I have three days of treatment every six weeks in hospital, which also fits into my medication/treatment schedule. Although I hate to admit it, my life really is ruled by my illness/medication.

So there you go — I wanted to give everyone a little more of an insight into my life living with a very rare disease and how it really gets me down even when I try my best to not let it affect my spirits.

You can find the video on Instagram or TikTok @risingfromtheillness.