“When we can no longer change the situation, we have to face the change ourselves.” ~ Viktor Frankl
I smile when the doctor tells me I have a disease that I will carry for the rest of my life.
He was calling with the results of my autopsy and the word he used was “Crohn’s”. I do not know what that means. But after months of pain that no one could explain, hearing the real name for it felt like someone had turned on the light in a dark room. I’m not afraid. I was relieved.
To understand why, I have to go back to the beginning.
It started with low pain in the right side of my abdomen. Appendicitis occurs in my family, so that was my first thought. I went on to tell the doctor that it must be my appendix. They keep telling me no.
The doctor first looked at me and asked, “Are you under a lot of pressure?”
At that time in my life, a few things went wrong and I felt like I was being attacked from all directions. So I answer yes a lot. He nodded as he explained everything and asked me to rest, maybe some rest, and travel for a few months.
So I did. I traveled for three months. The pain does not go away. If anything, it gets worse.
I went to see a second doctor. Same answer. It was stressful. Exercise more, reduce your workload, get more rest. I did it all. I still woke up in the middle of the night with severe pain in my lower abdomen that could have pulled me out of bed immediately.
A friend recommended a third doctor. I had some hope to walk in. It was funny, he said the same thing. Stress.
That’s when I started noticing something. “It’s stress” is something you sometimes hear when no one knows what is wrong. Everyone has stress in their life, so an explanation is always appropriate to end a conversation. It is not said with bad intentions. It is just the easiest place to land when the real answer is not clear. But I was the one who woke up at 3 am and I knew it was not in my head.
So this time I pushed back. I told him no, it was not stressful. Something is really wrong with me.
He paused, then said, “Okay, if that’s the case, let’s do a CT scan and get an in-depth look.”
That one sentence changed everything.
The scan showed what was going on in my lower gut. He referred me to a GI specialist who recommended a colonoscopy so they could do an autopsy and finally find out what was going on. I did the procedure. A few days later, the phone rang. That was the first time I heard the word “Crohn’s” and it surprised me to smile.
The relief did not last long.
As it turned out, it would not be simple. Crohn’s is a chronic disease. Simply put, my immune system attacks my digestive tract when it does not like something that causes inflammation and pain when food passes through that part of the gut.
The specialist came in person with me. “Because it’s chronic, this is something you will have to manage for the rest of your life,” he said. He told me to take it seriously because if I did not do it there was a real chance of surgery removing the damaged part of my gut. He prescribed medication and told me that if I wanted to feel better and keep things under control, I would have to change my lifestyle and diet.
Here’s the hard part about Crohn’s: It’s different for almost everyone who has it, and most of it falls on food. Some things cause it, but triggers are not the same from person to person. Someone can be completely fine with alcohol, but can not tolerate something as simple as orange juice.
In my case, the problem turned out to be alcohol, spicy food, orange juice, greasy fast food and coffee. I did not understand that all night. It takes about two years to take care of everything, add to it, and gradually learn what my body can and cannot do. Coffee is the hardest to give up.
At that time, I told a friend what I was experiencing. I expect sympathy. Instead, he looked at me and said, “You are so lucky.”
I was stunned. How lucky am I in this world to have a chronic illness?
He explained his meaning. The way he sees this will force me to eat well, take care of my body and take care of my health in a way that most people never do until it is too late. According to him, I was probably healthier than others, precisely because I had no choice.
At the time, it did not land. I’m too busy, sad because of the coffee.
But it has been about fifteen years, and looking back I understand what he meant. I cut out the foods that hurt me the most in my life, not most, but all the time. I walked a long time without an explosion. The discipline that the disease forced me to do was not in the kitchen either. It has changed the way I treat my body in general.
I will not pretend to be chronically ill as a gift, and I will not promise any extra years to anyone’s life. That is my friend’s optimism, not a medical fact. But let me tell you – it was one of those moody times where I would break into endless soliloquy with myself.
There are some things with me through it all.
The first is to believe in your body and continue to advocate for yourself. If you feel wrong and you continue to reject, do not stop asking. I heard “it’s stress” three times before someone ran a test that found the truth. If I had accepted the answer, I would still be in pain or worse. You know your body better than anyone, and you are allowed to keep pushing until someone listens.
The second is that a difficult diagnosis can be a strange turning point. Not because the disease itself is good, but because it can force change that you have stopped for years. It makes me face habits that I will ignore forever.
And the third is that the silver layer is often invisible when you are standing in a storm. My friend saw mine before I could. It took me a decade and a half to catch him.
If you are in the middle of your own version of this story, waiting for an answer, feeling rejected or sitting around with information you do not want, I do not tell you that it is amazingly secret. I will tell you that there are some situations that you can not change and that is when life turns to you and asks who you are willing to be. You may not like this task. But you can look back the way I am and realize that it is something that changes you for the better.
About Aman Sultani
Arman Soltani is vice president of design at PastWisdom.com, where he combines his passion for technology, design and self-improvement to create a thoughtful digital experience. Find out more at PastWisdom.com
