“We sure have been through a lot together, and after 25 years, I am still trying to figure you out.
You make my life so hard almost every single day. I cannot go an hour without stressing that, because of you, I am going to get pancreatitis. I worry every single day about the symptoms you may bring, and also how we are going to work together in the future. I want to have children and not have to spend my entire pregnancy in the hospital, and I definitely do not want my children to endure what I have had to.
I know that I am nowhere near perfect when it comes to eating, and I am the first to admit when I overdo it. You tolerate it when those brownies look too delicious to pass up — and by ‘tolerate’ I mean you don’t send me to the hospital. But you still make me pay for it the next day.
I feel like I try and treat you so nicely, but nothing works. Even when I eat perfectly — low carbohydrates, low sugar, high protein, and under 10 grams of fat — you are still unhappy, causing that awful and all too familiar rib cage and scapula pain. I can’t take pain meds 24/7! I have things to do: work, spend time with friends and family… you know, live a normal life.
I don’t think you’re aware of how scared of you I am. You scare me more than anything, because you hold my health in your hands. I have been hospitalized more than 30 times, one bout landing me in the ICU. I know that I have caused a couple of attacks with poor choices, but the rest is all you. I know you have heard me cry myself to sleep countless nights, and have felt my anxiety and anger.
The worst part is, I have grown so accustomed to feeling crummy every day that I have forgotten that it isn’t normal.
I have seen the stress and concern that you have caused my parents, especially when I was sick every two months for two years. You have caused us hell — oh, and getting sick on my dad’s birthday a couple of weeks ago, that was really great. We really appreciated celebrating in the ER.
One of the worst things is that I don’t feel like I have an outlet. When I am feeling really bad, I don’t want to be a burden on anyone. I don’t want people to ever think, ‘Oh, she feels sick again, she never feels well.’ I hate that many people do not understand what it is like living with this disease.
You have caused me to shut down, even around family and best friends, because I do not like to see them worry about me all the time. You have helped me become a great actress, because I fake how I feel every day. Faking that I feel well is mentally draining, and I hate you for being the root of my health problems.
But as much as I want to sit here and tell you how much I despise you, I can’t. Although I strongly dislike you, because of you, I have become so strong, an advocate, independent, and incredibly positive. I know that no matter what, you will never stand in my way.
At the end of the day, you are a part of me, and I hope that as time continues, we can learn to better work with one another, instead of against.”
— Lindsey Sutton, Co-Founder: The FCS Foundation
I am a Patient, too. I feel your pain.