I have been diagnosed with Crohn’s going on 7 years now and I have had a long time to come to terms with the disease. I understand it is a lifelong disease that has no cure, I get that there are good days and bad days but sometimes it still gets to me. Like recently. So let me be real with you and tell you what I am feeling. We all know having a chronic illness is a struggle, or at least most people know. I have written recently about my hip replacement story and how I just had my left hip replacement replaced and in 2 weeks having my right replacement replaced. This was something that was beyond unexpected given I have only had the first replacements for 3 years. The closer I get to surgery the more anxious and emotional I feel. I want to discuss what I am feeling now, I apologize if I seem like a Debbie downer or seeming like this is a poor pitiful me post. But I want everyone to see that I am human. I am weak. So here goes.
I’m pretty pissed off actually. I’m angry that my body hates me. The one thing that is supposed to protect me, my immune system, is instead trying to kill me. I am angry that I developed a rare bone disease trying to treat my autoimmune disease. I am angry that the surgery I had to replace my hips, that were supposed to last 10-15 years only lasted 3 and I am about to endure hip replacement #4. I am angry that this same terrible disease affects so many people and friends that I have in my life and love dearly. I am angry that I can’t be a normal 24-year-old. I am angry that a lot of people don’t realize how bad IBD or any chronic illness is for that matter. I am angry people don’t understand that having hip replacements doesn’t just magically make me a marathon runner. I am angry that people tell me to live my life despite my disease but when I get too busy I am told to slow down. I am angry that the best treatments for the disease still fall short sometimes. I am angry that my body has failed me.
I am sad for all of the reasons mentioned above. I am sad because I am in pain and some days nothing soothes the pain. I am sad because I have to endure so much that it just doesn’t seem fair. I am sad that not only I suffer but everyone with a chronic illness suffers. Not just those either, but my family and friends. My amazing wife who I am so thankful for has been with me through roughly 9 surgeries probably more I’ve lost count. She has had to take care of me in my weakest and most vulnerable moments. I am sad that she has to go through the emotional turmoil that comes with taking care of me, knowing it will be a lifelong battle. I am sad that there are days when I feel like I can’t be the husband I need to be because my illness seems to have won that day. She would never admit to it but I know it hurts her and makes her as sad as I am some days.
I am hopeful.
I am hopeful that there will be better treatments for my disease and others. I am hopeful that one day people will better understand IBD and think before they speak. I am hopeful that one day I and many others will be in deep remission.
I will continue to get up every day and force a smile on my face even though it feels like my insides are on fire or my joints are so stiff I can barely move. I will continue to fight and push back against my disease at all costs. I will continue to not be defined by the circumstances surrounding me. I will cry and I will laugh. I will continue to use my story and hardships to hopefully help others. I will continue my schooling and hopefully finish so I can take on IBD in a new way. I will not let my disease win, I will live my best life. Like all the times before, I will survive.
My goal for this post is not to make people feel bad for me but to understand what I and many others go through. In reality, you should feel bad for my disease because I am kicking its ass. 😉 Thanks for the continued support.