4 Things I Wish Others Understood About Life With a Chronic Illness
Have you ever tried to tell a story but the listener just didn’t find it funny? Where it was one of those “you had to be there” moments? Same. Every day. But it’s not a joke or a memory, it’s about my wellbeing. It’s like no matter how hard I try to explain it, I can’t make you understand how it is. I can’t make some relate by telling them how I feel. This is especially true when trying to explain to someone the mental toll or the “hard days.” But, I’ll give it a try anyways.
To me, there are four parts to understanding the emotional rollercoaster of living with a chronic illness. I am sure for everyone it is different, but for me and many many people, here are some things I wish those around me understood.
1. It’s always there.
I have this disease on my bad days when getting out of bed takes all the energy I can find, and I have this disease on the good days when I am able to run errands, go to work, see friends and cook dinner. It isn’t that the disease went into hiding or went back to where it came from; it is still there. The only difference is that I was able to find energy that day. I was able to feel like the day was worth fighting for. Some days, I am conquered. Some days, I will conquer. I need people to let me choose which days those are and let me have those days. I am in pain and I am weak and fatigued. I am struggling to find words and the thought of food makes me nauseous. It is OK when those days happen, and it is hard for me. I do not like it and I do not want to be conquered that day, but sometimes it happens.
2. It consumes my memories.
This sounds sad, and I do not mean it that way. In fact, it’s really OK. I have been diagnosed with juvenile rheumatoid arthritis since I was 9, but I have had the disease for much longer. That means 11 out of 20 years I have spent with hospitals, doctors, pills, IV’s, pain, fatigue and the horrible scent of waiting rooms. Sometimes when I think of positive memories, it leads to something dealing with my disease. One of my greatest memories for some reason is when my dad came to my Orencia infusion at the hospital for the first time and a service dog came through the doors. He got on the bed and licked my face and I had a picture taken with this pup and my dad. I love this memory I shared with my dad! But, it was in a hospital. Some of the most amazing people I have ever met have been from conferences and hospitals I have gone to because of my disease. These people bring me nothing but joy, yet I wouldn’t know them if it wasn’t from my disease. Some days it is hard that so many of my memories are from disease related things. It is a constant reminder of my problems. So many times I will go to tell a story and I will realize halfway through that it happened in a hospital. This is sad to me. I want memories from going to Disneyland or playing on a soccer team, I want memories of middle school drama and prom. I don’t have those. I don’t have “normal” memories.
3. I’m sorry.
I’m sorry, I’m sorry, I’m sorry. I want to say this to everyone in my life over and over. I feel guilty for putting my family through the stress and the tears and the sleepless nights. I am guilty for the times someone has tried to be my friend and I kept saying no to hanging out. I am guilty for the times my mom and I have gone to the mall and I have had to leave early. I have immense guilt because whether they will admit it or not, my disease has affected their lives – and not for the better. My disease has held me back and put me down and I hate that I feel guilty for my health, but I do. Everyone says that’s silly of me, but I know my health has caused stress and sadness. Just know that we who are chronically ill do not want to cancel plans or stress you out, it’s inevitable. And thank you to those that continue to stick around, so many haven’t.
4. The future is scary.
The future is up in the air and that scares me. I have always wanted to get married in my 20s and have a big family, but not only am I unaware if I can even get pregnant; I do not know if I can physically handle it. What if I have two kids and go into a flare? That isn’t fair to my future kids or my future spouse. Is it selfish to start a family? Can I serve my husband the way I want to? My career is in the air. Ever since I was a child my mom has prepared me to choose a career I can conquer in a wheel chair. I have this in the back of my head, but there is no job you can take 25 to 30 days off in a year like I did my senior year of high school in just one semester. I don’t know what is possible, and that’s hard too. There is a chance I will kick-ass at everything I do and there is a chance I will struggle with everything I do. I walk around unsure of my future on a level most able-bodied people cannot understand. To those like me, don’t ever think you’re alone. I am here and I am scared too.
So, to those living around someone chronically ill, try to read this with an open mind and don’t forget next time you’re around someone living with “a little more than just the pain.” We are people too, just with a few more bad days.