Five Chronic Illness Lessons I Have Learned.
Lately I have been thinking a lot about how having a childhood illness shaped me, as a person, as a teen and an adult. I’ve asked myself often what, if any chronic illness lessons, I got out of that experience.
Some of you know I have Crohn’s disease, an inflammatory bowel disease, also now thought to be an autoimmune disease, without a known cause or cure. I was diagnosed at 14 after a period of months when pounds melted off my frame faster than you can even imagine. My abdomen hurt all of the time, as in so much cramping that I thought I would pass out. Sometimes I still get that pain, which comes out of nowhere and blindsides me.
Crohn’s Disease Symptoms
There were more symptoms of course, like chronic diarrhea, bloody stools and vomiting. Weight loss, exhaustion. Inability to eat. Anemia, cramps and more.
There is nothing pretty about Crohn’s disease, not that any disease is pretty, but bowel disease can be particularly gross. The year of my diagnosis I spent a zillion hours in bathrooms all over Guelph, Toronto, Collingwood and Wasaga Beach. Then I spent weeks in and out of hospitals and emergency rooms.
Here’s How Crohn’s disease Changed Me
Listen, having Crohn’s sucks. There’s no need to mince words. Missing weeks of school and being in hospital a dozen times in your teens is not fun. Nor is it a path anyone would choose on purpose. There’s nothing redeeming about having your body opened up over ten times to remove bits, like large sections of gut, repeatedly.
Also, it feels awful missing out on life when you are too sick to be out of hospital or out working. Missing school and being in hospital for birthdays, Christmases and other holidays is a hard pill to swallow.
Reconfiguring all the systems so that you can walk and eat and function again outside a hospital. Relearning how to do everything and stopping and starting school, or jobs over and over, sucks, period. Society has a lot more to do in order to build equality and support for people with disabilities. But I think that’s another post entirely.
It is dead exhausting and it hurts, both physically and mentally.
But at the same time, now two decades after all of the surgeries and diagnosis, I have enough distance from that initial round of brutal treatment and surgery to recognize how this changed me dramatically as a human.
Five Chronic Illness Lessons
Having Crohn’s oddly shaped me into a resilient person.
In a nutshell, I know I am a survivor. Listen, when your abdomen has been opened up and parts removed and you are expected to stand the next day and walk around the room so your body begins to heal, or you need to resume eating after your gut has been attacking you internally for months, and you do it, you know you have got this.
Acute flares of Crohn’s followed by long hospital stays and seemingly barbaric treatments, simply showed me I was resilient. Maybe that was the lesson.
Somehow, I still always look for the bright side. If I didn’t, I’d wallow in self pity and pain far too many days. So, there is a bright side, in my opinion, to this story.
But here’s the thing. Lately, when I pause to reflect on how that experience shaped my life I think well there was some good that came out of that pain and this horrible digestive disease.
And there’s typically always a positive. You might need to dig for it, but it’s there.
I’m an Advocate
I didn’t have a voice for years in the health care system as a child. Instead, I blindly accepted what doctors told me. Now, I know the questions to ask and how to ask them. In fact, I found my voice late in my journey. While I’d love to tell you it was some big internal aha moment, it was actually a new young surgeon who spoke to me as an equal in my mid to late 20s and engaged me as a patient. That simple approach pulled me out of the passive state. Sometimes it makes me nuts thinking how many doctors and surgeons were completely ableist and patronizing prior to that one experience.
By the way, he still practices here in London Ontario. His patients are blessed to have him.
The chronic illness lesson there was speak up, educate yourself on your condition or illness and ask the right questions. Don’t be afraid to seek second opinions and ask about the medication side effects. As someone on TikTok says frequently, You ARE THE MAIN CHARACTER.
I adopted my children and likely wouldn’t have otherwise. Had I not struggled with a chronic illness, pain and Crohn’s disease, I probably never would have sought out domestic adoption as the means to becoming a parent. True story.
Adoption is such a rewarding way to start a family, but it is also often not the standard or first choice. The love I have for my family is immense and overwhelming and I would never ever change my family. My kids are amazing and they teach me new facts and skills every single day.
The adoption community I have found is such an incredibly supportive and diverse resourceful group of parents. So very grateful that my path led us here.
I wrote about Parenting and Crohn’s disease for CBC Parents in early 2020. Read that post here – > https://www.cbc.ca/parents/learning/view/im-a-parent-with-crohns-disease-heres-how-thats-worked-out-for-me
This could be related to optimism and resilience, but it is a lesson that I hold close. I know I am strong. There’s little else that matters really. Like, for instance, I can do hard things. Physically, I know I am capable of doing the heavy emotional lifting even in times of crisis and that I will get through whatever comes my way.
Life is All About Learning
Every person, every experience, is a lesson or a gift. While it might not seem like it at the time and it’s often excruciatingly hard to fight your way through the dark times, having a childhood illness can sometimes just show you who you are. That’s a huge gift, especially when so many others spend lifetimes trying to explore that very concept.
Thank you for that point about being the Main Character in your chronic illness journey.
Lots of figures are Informed and Empowered Patients.