I recently came across an article on The Mighty, entitled “What it’s like to be diagnosed with a chronic illness in your 20s.” I was immediately drawn to the story since I too was diagnosed with Crohn’s disease when I was 21-years-old. The author, Catherine Emerson, who is 21, inspired me to reflect on that time in my life and also think about how my mindset and identity has changed over the last 11.5 years. It’s my hope that my words will bring people in her shoes solace in knowing that the best is yet to come.
When you’re a 21-year-old good health is expected. Between work, school and socializing you oftentimes feel invincible to anything going wrong. But when the tides suddenly change and you’re blindsided and told you have a lifelong illness, it can feel like you’re drowning in a state of unknown.
As if the prednisone giving you insomnia wasn’t enough to get your first flare up in check; that initial diagnosis leaves you up all night, gasping for air. There is so much fear and so much helplessness. When you’re told you have Crohn’s at age 21 it feels like that’s your newfound identity. “Hi, I’m Natalie. I have Crohn’s.” You begin to think and feel that everyone in your inner circle labels you that way and looks at you with sympathetic eyes as you take 22 pills a day to get by.
It’s difficult to go from being a completely healthy person… to your family staring at you during dinner—wondering if you should be eating that, or sighing with sadness when you run to the bathroom mid-meal, constantly asking you “how are you feeling?” It got to the point where I had to tell people to stop asking me that question.
During the time of my diagnosis I was actively searching for my first TV job—I went from being excited about reporting on camera to doing anything to dodge the mirror. I have very few pictures of myself from this time in my life because I felt so hideous and self-conscious. In the photo at the top of the article, I had been sick for weeks and struggled to attend a baseball game with my brother. I didn’t know what was wrong, for months I was unable to eat without pain and had fevers topping 104 degrees. The photos to the left are what months of steroids and medication caused post-diagnosis. While Crohn’s is an invisible illness for the most part—when you’re going through a flare, it begins to affect your outward appearance as well, whether it’s drastic weight loss when you’re too sick to eat anything other than liquids or weight gain and water retention from treatment. Finding that balance initially is so challenging.
In her article Catherine talks about how as a 21-year-old she was “excited by the prospect of fun and exciting experiences” and that when her health started to decline that her world was “completely shattered.” I can relate and I know the feeling—but, to all the Catherines out there—who’ve been told they have a chronic illness in their 20s, I’m here to tell you that while there will always be difficult days along the way that may break you temporarily, you will learn so much about yourself and so much about your body that it will be an ongoing experience that empowers you and only makes you stronger.
Now—as a 33 year old, married woman who is expecting her first child in less than six weeks—I can tell you firsthand—there are people out there who will love you unconditionally and embrace you for who you are. Your future is bright and you can experience all of life’s exciting milestones like the rest of society. Your disease will enable you to see people’s true colors and character in a way you never knew possible. It actually makes finding a spouse easier because you can see who has true heart. Your perspective about life and challenges along the way will shift. One day you’ll wake up and feel like despite the never-ending worry and wonder that looms with Crohn’s—you’ll come to a place where you feel confident that you are in control. Rather than your identity—your disease is a part of what makes you unique.
What felt like a scarlet letter in my 20s, now feels like a badge of honor in my 30s. Instead of shying away from admitting I have an illness, I’ve found it more helpful to be vocal and let others know that part of my life story. Living with Crohn’s doesn’t make you weak, it makes you tough—mentally, emotionally and physically.
Here are 5 tips for overcoming the initial shock of a chronic illness diagnosis.
- Be patient with yourself and those around you.
Give yourself time to heal and process the news. Don’t blame anyone or anything for your diagnosis. Instead, tell yourself that God gives his toughest lessons to his greatest teachers.
- Don’t suppress your emotions.
If you need to cry, let it out. No apologies needed. Writing in a journal is cathartic. If someone is negative or makes you feel less of person because of your disease, remove them from your inner circle. Focus on the positive people and experiences in your life.
- Network and find people who are living your same reality.
The most helpful tool you’ll find is socializing, whether it’s in person or online with those who live with your same disease. As supportive as friends and family want to be—there is no way for someone who doesn’t have Crohn’s to truly grasp what it feels like. Use those friendships to lift your spirits; you’ll feel an instant connection with those who can relate.
- Celebrate the small victories.
While the diagnosis will stop you in your tracks and change your daily life—whether it’s diet, sleep or exercise—give yourself credit for the milestones, even if they seem minuscule. When I was first diagnosed I went eight months without eating a fresh fruit or vegetable. To this day—I can still remember having a salad for the first time—and crying in the middle of a restaurant with my family… because I was so happy.
- Don’t focus on the long term—focus on the now.
Thinking about having a disease for the rest of your life is overwhelming. There’s no telling what trials and tribulations are ahead, but in reality—that’s the case for everyone. Focus on each day and don’t let yourself get caught up in the worry of when your next flare up will be. You’ve encountered one before and overcome and you’ll do it again.
Catherine closes out her article by saying, “Please think before you make comments, and be understanding of the demons people like me battle every day. I am learning to live and love myself again, but it will take time and a hell of a lot of support.”
For those who do not have a chronic illness—please take Catherine’s words to heart and know that even on “feel good” days, there is a constant inner dialogue going on in the minds of Crohn’s patients. It starts the minute you wake up—and doesn’t stop. The best thing you can do is show compassion to all, because you never know what battles a person is fighting from within—if you only judge from the outside.