Open Letter To Texas: Explaining Complex Medical Conditions To Kids
One of the reasons my wife and I chose to buy our house in Temple, Texas was to be close to the medical facilities. Having 3 young children will leave you needing quick access to quality medical physicians and care. Throw in my 6 autoimmune disorders, and it's no challenge to understand why we want to be in the shadow of Baylor Scott & White and McLane Children's hospitals.
My son asked yesterday while injecting myself with medication, "Are you going to die?" In an attempt to always be honest, I did start to say, "Well, we all die at some point," until my wife gave me the look.
After a quick pivot, I explained that I wasn't dying, and just taking medication to keep myself healthy. I reminded him that he's had shots before too, so he can avoid sickness.
A Brief (Medical) History of Noah
People often ask why I don't share more often about my extensive medical history, and I honestly do not have a great answer besides, "Life ain't easy for almost everyone."
It's always been my approach that if you live entirely in the area of your brain that can't escape the bad stuff, then you'll never reach the good stuff.
Without a doubt, countless people have it way worse than I do, so if I fail to find joy and contentment, I am not just cheating myself, I am also cheating them.
What exactly do you have, Noah?
I'll give you the big 3 because the others are pretty obscure, and most autoimmune disorders overlap and run parallel, so that is why it is incredibly difficult to diagnose them.
- Ulcerative Colitis - Diagnosed at 16
- Rheumatoid Arthritis - Diagnosed at 30
- Crohn's Disease - Diagnosed at 40
The first one nearly killed me at age 21, so a team of surgeons went in, and took out my colon (large intestine). Life from there was pretty good, and I honestly had no complaints for a long time.
RA, for me personally, is kind of like a mosquito bite. It is super annoying, but you can mostly ignore it. Not everyone has the same severity of symptoms.
Crohn's is a honey badger. It does not care! Can only imagine its symptoms are exponentially amplified when you remove the large intestine en route to the exit. 0 out of 5 stars, do not recommend!
How do you treat it?
Immune blocking biologics are used to treat most of these, and finding the correct chemical compound can be really challenging. These are all those commercials you see on TV all the time telling you to, "Ask your doctor to find out if [drug] is right for you."
I am currently taking Stelara, and have not been pleased with it thus far. Good news is I have an upcoming appointment with my gastroenterologist. I complain about how awful it is to have chronic diseases, and they ask me if I would like to speak with someone about my feelings.
NO! I want you to prescribe a drug that works! The real kicker is they have you stay on a drug for almost a year, even when you tell them it's failing, just because it may take a full year to receive the full benefits.
What's the takeaway?
Be honest and upfront with your kids. Nobody knows them better to gauge the degree to which you explain based on their age and maturity. However, please don't underestimate their ability to understand and empathize when you explain your illness, how it's treated, and what it means for your lifestyle. They love you as much as you love them.