Five Things I've Learned from Ulcerative Colitis
Written by Jon Paladini
Being diagnosed with Inflammatory Bowel Disease (IBD) before the age of three meant that I was born into an existence that harbored pain, anxiety, and uncertainty about the future. My norm was almost always abnormal. Because I had no understanding of what that “normal life” felt like, I tried to carry on with life as best as I could. This was all while dealing with the negative effects of the disease and also the occasional mismatch between my physiology and cocktails of drugs.
Steroids, low-dose chemo, hospitalizations, infusions, and injections were, and are, all a part of my life. They are the required steps necessary for betterment and sometimes those steps led me to the wrong place before I got to where I needed to be. Other times, the stable ones fell out from underneath me with no notice. I have accepted that by having this condition, it will define me in both bad and good ways. Saying something won’t define you is already the nascent stage of a new definition; one which only came about because of the initial catalyst - in this case, Ulcerative Colitis. I am many things because of these experiences. Here’s what I’ve learned and want to pass on.
1. You Will Suffer, and Most People Won’t Understand
I don’t say that to come off cold, or heartless. I say it because it is the truth. From what I’ve seen, I do not believe people have the capacity to truly understand the perspective of someone else who has a unique disease or ailment. Yes, they most certainly can empathize and show compassion, but our suffering and our pain is our own. Fortunately, we can forge stronger connections with those who have Crohn's or Ulcerative Colitis. The connection with others like you is mutually beneficial. They will have a deeper capacity to understand you. They will not judge you. They will listen and share their own experiences with you. That community is something you should become a part of.
Your friends will be there to alleviate the pain with humor and companionship, and your family will be there for the most challenging aspects, but aside from your parents, you will bear the brunt of this journey. So, be ready, and as tough as it is to do, find ways to stay strong - both mentally and physically.
2. Create Meaning From The Suffering
A helpful way to alleviate some of the angst can be by envisioning how your unique life and corresponding experiences can be shared with the world or this community. For example, after years of many mediocre or failed drug regimens, I got onto one biologic medication that worked. After that medication, I felt healthier in a way I never felt before. It gave me the opportunity to go to college, and live symptom free for almost ten years.
When I’d get these infusions, my mother or uncle would bring me a Men’s Health magazine to pass the time, and I remember saying to myself, I’m going to somehow either work for this company or get into this magazine and raise awareness for this disease while doing it. It took about 7 years, but an opportunity popped up and I ended up on the front page of MensHealth.com for a day advocating for people like us. I had a lot of help from my community, but we got it done!
Ultimately, what worked for me was that I funneled that early lifetime of humiliation and negative emotions into the endurance activities I pursued. And like many before me, I realized that those activities could further serve as a platform and opportunity to do more as an advocate - especially for those who were unsure about choosing between certain medications or getting surgery.
Since then, I’ve done some work with the company that makes Humira and also Under Armour. I’ve also been featured in some media connected to an ultraendurance trialtiolon called the SOS triathlon where I spoke a bit about what life has been like with UC. I don’t have an entrepreneurial bone in my body, but what I can tell you is you can and should try to identify ways to bring your unique life to the table so that others can learn or be inspired by it. Create meaning from the suffering and you can alleviate your own pain and inspire others.
3. Stay Vigilant
At this point, I’m sure you can understand where I’m coming from, but I’ll make it very clear: this journey isn’t easy. Everyday we’re being bombarded by typical life stressors that are enough to break the best of us when the heat is turned all the way up. These conditions are extra jet fuel sitting next to the roiling fire.
You have to, at almost all costs, find ways to keep your body, and mind strong. I’m not saying to keep that sympathetic fight-or-flight reaction flipped on and turned all the way up, but I'm saying that you need to bolster your physical resilience, and regularly remind yourself that you can cope with something difficult. You will have that extra layer of “armor” for that moment things start to dip south again. That could buy you precious time, or help to avert a total relapse. There are no guarantees with anything, but it is worth the extra effort.
4. Know the Lay of the Land
This is the area I’ve struggled with and failed at the most. You must understand the landscape of the world you are a part of—as early as possible. Despite dealing with this illness, and all the pain that comes with it, you have to direct attention to this. When I was young, I was focused on getting better, and then once I was better, I was a bit too naive. That is where I failed, and if you’re young and reading this, you must know this. Each place in this world manages healthcare entirely differently and in America, it’s a mess.
Our health insurance is generally tied to what our employer offers us. If our employer doesn’t offer any coverage, or good enough coverage to grant you access to required treatment, our access to care quickly becomes limited, or non-existent. As an individual, we have no negotiating power with insurance companies.
If you are young, you must recognize that this is a problem you will have to face. Because there is not a universal system in place here, you will have to very carefully select what profession you want to move toward and try to, very early on understand what their benefits packages will be like. Some companies will be shady, and might not even tell you what they offer. Ideally, you’ll be able to get an answer from someone in HR about the type of coverage they offer, and if it has your needed medications under their umbrella of coverage.
5. Know Your Pillars
Each of us have a few fundamental elements of life that bring us joy, or satisfaction. Identifying or clearly defining what, or who those pillars are, will keep you stable during turbulent times.
● Your Friendships. I believe long-standing friendships are essential. I still am extremely close with friends I went to high school and college with. We support and listen to each other. They know my past and to the best of their abilities, really try to understand and help me out when the going gets tough.
● Your Family. My family was there for me every step of the way throughout this chaotic journey. They are still there for me, and I am there for them. They’re in a league of their own and I am never going to be able to repay them, but I do my best to let them know how grateful I am for their love and support everyday.
● Your Passions/Hobbies. I can’t tell you how many times I was sick and resorted to gaming on my PC or PS4 with friends to help alleviate some stress during those rougher patches. That said, If I’m well, I am always moving. Exercise and spending time outdoors is a more unique pillar in that it brings a great deal of intrinsic joy and satisfaction independently or with others. I believe we all need one or two things that we can do on our own which induces happiness or satisfaction under the circumstances of being solo.
About Jonathan Paladini
Jonathan Paladini is a Certified Strength and Conditioning Specialist, Licensed Physical Therapist Assistant, and is currently pursuing a Master's in Education. He has participated in a range of endurance events such as the Ironman Triathlon and SOS multi-stage race. He has also briefly worked with Under Armour, Abbvie, and has been featured on the front page of MensHealth.com to raise awareness for autoimmune conditions. You can reach out to him or follow him on instagram @jonpaladini.