What I've Learned From My Year With Chronic Illness
May 7, 2015
To say that the last year has been a learning experience would be a massive understatement. I would say the more accurate description would be "completely upheaving and repositioning everything in my life." April 1st marked one year since my UC diagnosis, and this month I've been on Remicade for one year. Yikes. It's so weird--I have a tendency to think of my life now as before/after UC. When you have such a life-altering event happen in your life, it's hard to not completely reframe your way of thinking about things. I am a completely different person now than I was even a year ago. Here are some things I've learned:
Nothing else matters except your health and your family/friends.
I would be nowhere without my incredible support group. I was sitting around the table with some of my girlfriends a few nights ago (laughing our heads off, as usual) and had a moment where I looked around and thought "If I had nothing else, just them, I'd be okay." On a similar note, I have no idea how people who don't have a supportive family deal with this disease. UC is so up and down--I'm never not thinking about it. Thankfully, my family and friends have taken this change in my personality in stride. DA REAL MVP is my Mom, who always brings me a dose of real talk when I need it. To have your health taken away from you and be told that you're going to be managing a serious illness for the rest of your life is a tough pill to swallow. Despite this, I have never felt more loved in my entire life. I am so, so lucky.
People are mean.
This one surprised me. People don't understand autoimmune disease. People think it's your fault (you shouldn't have eaten so unhealthy), they think you are overreacting (I heard that so-and-so worked for this person, so just try it and stop complaining), and worst of all-they don't really think you're that sick because we don't look like we are. Misconceptions are the worst part of IBD. Since chronic illness doesn't have the "cancer" label on it, many people don't know or don't care about what I'm going through. This makes me sad, because suffering is suffering, regardless of the type you have to endure.
To yourself, most importantly. Being kind to yourself can be really hard. We like helping others! We like putting other people first! Self-care is so, so important and many people don't realize how important it is until they've already made too many bad choices. Eat as well as your body allows, find a form of exercise you actually enjoy, and stop beating yourself up for things you can't control. I'm a firm believer in the fact that the words you say to yourself can be some of the most hurtful. Choose to be kind to yourself, first. The rest will come.
Eliminating stress from your life is the best thing you can ever do for yourself.
All the people who think stress doesn't play into autoimmune disease flares are full of crap. Do you feel great when you're stressed out? Remember when you got sick right after you finished a stressful project or season at work? Or when you caught the flu right after finals week? Stress destroys your body. Take a good look at your life and your schedule. What are triggers for you? Do you have a packed social calendar because you're trying to make too many people happy? Did you bite off more than you can chew at work? Ask for help. People will step up.
Then, eliminate. Get rid of the people who bring enormous amounts of stress in your life. Find ways to cope physically and mentally. Give yourself time to recharge after a long week. Your body and overall well-being will thank you.
You have to have the bad days for the good days to mean something.
I've said this before--there are days that SUCK. There are days where I am miserable, or when I'm constantly thinking about the future. Wondering what limitations I'll have, wondering if I'll have had surgery by then, wondering if I'm making the right choices for myself. Days where I have a cold and feel like I got hit by a train because my immune system is shot. But, there's a bright side to the bad days. I have a much better appreciation for LIFE now. I am LIVING with chronic illness. I am THRIVING despite the fact that I have had insurmountable obstactles put in my way. This makes the good days really, really good. I've always been told to not sweat the small stuff, now I finally understand why.
Life is truly what you make it. I choose to view this disease as an adventure. And what an adventure it will be!
I am raising money for the CCFA to help find cures for diseases like mine. To donate to my fundraising efforts for the CCFA-please check out my website: