Chronically Ch(ill): How Having an Invisible Illness is Helping Me Learn to be a Better Me
When I was a little girl, I had a hard time eating most things. For many years, my stomach would hurt horribly after each meal, sometimes causing me to double over in pain. My family and I had no clue what was wrong - we thought, “maybe she’s lactose/gluten/insert-whatever-thing intolerant?”. After a while, the pain and discomfort became my norm. At the end of my sophomore year in high school, I came down with the stomach flu, which exaggerated all of the symptoms I had already been dealing with. After some routine bloodwork, my doctor told me I needed to go to the hospital, and I needed to go now. My blood count was critically low, and I was dangerously anemic. So, I stayed in the hospital for about five days until my counts stabilized, and then I was sent off with more questions than answers. A year after that, I underwent my first endoscopy/colonoscopy, and voilà, I was diagnosed with Crohn’s disease - a chronic illness that affects the gastrointestinal system.
“Finally!”, I thought. “Now I know what my deal is”. And although I was relieved to have this information, I was really scared too. I had no idea what the future held, or what obstacles I might face. Would I have to get an ileostomy bag? Would my tummy always be that loud? Luckily for me, I had an great support team of doctors and nurses that helped me understand what exactly was going on, and what kind of treatments I would need to start feeling better.
I started Remicade infusions as treatment, and the pain I was so used to went away very quickly! But, I still had to sit in a chair for four hours every few weeks with a very potent drug being pumped in me.
As you can tell from the caption, these treatment wipe me out for the rest of the day! And I still had to have almost a dozen MRIs, endoscopies, colonoscopies, and more blood tests than I ever thought I would have. At least I’m not afraid of needles anymore. Oh, and the Remicade had horrible side effects, like bleeding sores all over my scalp, painful acne, and rashes on my legs, which meant I had to start taking another drug to ease the ill effects of the infusions. And then there’s the chronic fatigue I started experiencing last year…
I give you all these details not to set myself up as a victim, but to illustrate that for many people with chronic illnesses, the road to feeling better often isn’t a straight line. I’ll make progress, and then I’ll have a flare-up or a bad week of fatigue and feel like I went back two steps.
But ask any person about their journey, whether it be a weight-loss journey, a self-love journey, or a faith journey, and they’ll likely tell you the same thing - progress isn’t always a straight line forward. In realizing that, I’m learning how to accept my health-journey, and be a better advocate for myself.
I’m always trying to push myself toward being a better version of myself, and surprisingly, I think my illness has helped facilitate that.
It’s taught me that I am strong. I can handle pain, discomfort, fear, and I can get through it just fine. And now I know that other people with chronic illnesses are strong too. We’re not sad and pitiful, we can actually probably handle more than most can!
I know now that I have an obligation to my body. It’s my responsibility to take care of myself, whether that be supplying my body with good foods, getting enough sleep, or taking a break when I know I need one.
One of the hardest things I’ve had to learn (and am still working on), is how to ask people for help. I’m the type of person that doesn’t like to tell people my problems for fear of “burdening” them, but that’s not healthy. Lately, my chronic fatigue has been sapping a lot of precious energy, and as silly and small as it sounds, I’m not embarrassed anymore to ask my friends if we can take the elevator when we’re on our way home. That doesn’t make me pathetic. I’m not embarrassed anymore to tell them my fears about the possibility of having surgery in the future. That doesn’t make me paranoid. I think it makes me mature, actually.
And my goodness, having Crohn’s is a constant reminder to give people grace. The tired saying of “you never know what people are going through” is true, true, true. Don’t excuse bad behavior - I’m not advocating for that, but don’t make people feel embarrassed or ashamed if they’re having a less-than-stellar day. Be someone who lifts up, not one that puts down.
Crohn’s doesn’t define me, and it never will. But you can be sure that in all those quiet hours sitting in the hospital, it’s made me think a lot about what I do want to be defined by.