Just ask for help. It sounds so easy, right? It wasn’t for me. I was 21 and newly diagnosed with ulcerative colitis. As a student with a full schedule, I didn’t have the luxury to wait on my body to catch up with my medication. And I didn’t want to ask for help, either.
In fact, I would regularly chide myself, “Nour, things will look up soon, just give the medications some time.” “There are others with chronic illnesses too.” “Think about what you can accomplish if you don’t think of yourself as having an illness.”
I told everyone I was OK. And I promised to reach out to those around me for support. But I didn’t. Because I didn’t have a plan for how to make “I’m OK” into a reality. I felt lost on how to work toward being OK with my illness, with my new body, and with this new future.
My younger sister would often (and very sarcastically) tease me, “Really, Nour, stopping telling us how everything makes you feel. It’s overwhelming!”
She was right. I wasn’t expressing how I felt or sharing my thoughts and vulnerabilities with my family and loved ones. My biggest fear was being thought of as weak or incapable. And I was concerned that I would be a burden on my family.
That same sister also has Crohn’s disease and was frequently in and out of the hospital. I didn’t want my parents to worry about me, too; they had enough on their plate. They were already consumed with guilt and felt responsible for having not one, but two daughters with IBD. I decided it would be easier to pretend everything was fine.
The thing with healing, mentally and physically, is that it isn’t a linear process. You have setbacks and improvements. It can fluctuate depending on symptoms, current medication, provider, family, and external environment (peers, co-workers, professors). It’s a deep, interwoven fabric.
As someone who enjoys knitting -- even though I’m not very good at it -- I still get the occasional rough knots and uneven rows, but the overall product is presentable. It can make a nice gift. Recovery is the same. Some days are long and unpleasant, and the good days can help channel and provide anchor for the rough days.
After 10 years with this disease, I’ve learned what we may call “lessons!” I needed to learn what my physical limitations are and respect my body’s need to rest, during a flare and in recovery. This realization didn’t happen for me right away. My motto was always “keep moving”! I needed to stop and re-evaluate my priorities, both short-term and long-term. I realized I wasn’t healthy and that I was unhappy and overwhelmed.
Around 3 years ago, I finally found myself in a place where I no longer felt scared or reserved about speaking and sharing my struggles with ulcerative colitis. It was a slow, gradual transition that I attribute to being involved with the Patient Advisory Council (PAC). This organization develops educational toolkits and resources for patients by patients.
I also switched GI doctors, and that made such a phenomenal difference in my life. I felt validated and heard for the first time since my diagnosis. I didn’t realize how much was missing from my care and consequently how that affected my treatment.
Speaking with other IBD patients as part of the PAC made it easier to talk about this disease with my family members and to advocate for myself both academically and in a professional setting.
I can’t expect others to check in on me if they don’t know I’m struggling. My current employer and co-workers are aware of my medical history with ulcerative colitis and regularly ask about my health and overall well-being. They even make sure I keep my medical appointments -- how awesome is that!
During my undergraduate studies and in my graduate program, I went through very difficult episodes with my ulcerative colitis. I was hospitalized twice, but still didn’t seek help with my academic councilor or seek accommodations. Not only did that affect my academic performance and my success, it was also very isolating to deal with a chronic illness in the shadows. In some of my work with PAC, I hope to reach out to help patients with recent diagnosis navigate the world with a chronic illness and teach them about the resources available to them.
Yes, it’s so easy to tell patients, “Just ask for help!” But what that means and how that looks for each person is different. Sometimes, the patient needs to be comfortable with their new body first and then slowly build the courage and confidence to say, “Yes, I do need help sometimes. It doesn’t mean I’m not smart, or intelligent, or capable, but what my body can handle looks different each day.” In my case, it took me 7 years to feel comfortable asking for help and sharing this very personal struggle.
Photo Credit: Malte Mueller via Getty Images