By Samantha Rzany
Sam is an independent artist, check out her Redbubble website for IBD stickers or you can message her on Instagram at Samantha.rzany
It’s easy to sit and write about the positive things I’ve learned from life with a chronic illness. I can talk all day long about my journey and what it’s been like for me. I have no problem sharing details about my symptoms and side effects and the physical symptoms of my disease. But what is hard is to be honest. I find it difficult to admit just how hard it is to live with ulcerative colitis.
Anytime I share with someone that I have a chronic illness, they often apologize. I tend to quickly brush it off and say that it’s okay and then proceed to share the numerous opportunities I have gained from my illness. But it’s not okay. And I’m not okay. Living with IBD is hard. Every single day. It is frustrating. It is exhausting. And it’s just not fair.
As a 22 year old, I want to be able to go to my 4-day-a-week-job and return back home each day without feeling so absolutely fatigued that all I can do is lay down in bed until I have to leave the next morning. I want to be able to enjoy my three day weekends and spend time with friends and have fun. And I’ve certainly tried to do that. And it starts my week off horribly. I start my work week with my energy below 0.
I find the spoon theory to help me explain this really well. Each person starts out with a certain number of spoons. For a chronically ill person, the number of spoons is significantly less than the average person. Every single activity (going to work, hanging out with friends, running errands, etc.) takes some of those spoons away from you. And it is very hard to refill your spoons. So when I spend my weekend hanging out with friends and having fun, I start my work week out with no spoons. I very quickly go into the negative. Until my only option the following weekend is to sleep all day everyday.
It’s an incredibly frustrating cycle. The absolute fatigue from doing very normal things is debilitating. And people just don’t understand. They see me as lazy or a typical “millennial” who just wants to get money and do no work. But it’s not the case. I want to work. I want to go back to grad school. I have so many ambitions for my life. But I am limited.
It’s frustrating that the medication that is putting my IBD in remission causes so many issues. I find myself seeing specialist after specialist to fix issues that all stem from one medication and one condition. I have to see a neurologist for the migraines I get. I have to see a dermatologist for inflammation in my scalp and rashes on my hands. I have to see an optometrist for inflammation in my eyes. The list goes on and on. I often joke that I’m a 22 year old in a 60 year old’s body. But the sad thing is that it’s truly how I feel. And it scares me. If this is how I’m feeing at 22, what will I feel like when I’m older? When I am 60?
I don’t like sharing what it’s really like living with IBD. I don’t want people to pity me. I don’t want to burden people with how hard it is. I don’t want my close friends and family to be scared or upset for me. So I often put on a brave face and share my story and hope to empower others to do the same. But life with a chronic illness, especially at 22 years old, is hard. It’s frustrating. It’s exhausting. It’s overwhelming. And many times, it is incredibly lonely.
I’ve only had IBD for about a year and a half. So I’m pretty new to all of this still. I know there will be times when it gets harder and times where it gets easier. And I’m sure I’m not the only one feeing like this. The frustration, the exhaustion… it doesn’t just go away. But I have found that talking about it helps. Talking to my family and my close friends. Sharing with those in the IBD community what I’m feeling. Even though it doesn’t take away my disease, it makes me feel less alone.