Diagnosis: a chronic invisible disease discovered after a 9 inch small bowel resection and appendectomy.
Age: 18
Treatment plan: immunosuppresants used in leukemia treatments, can cause cancer and leukemia when not used to treat cancers.
Patient: ME.
Writing those few words still takes me a minute to remember how terrified I was nearly a decade ago. I was graduating high school soon and looking forward to going to college, but my bowel had other plans. I was diagnosed with Crohn’s Disease, and inflammatory bowel disease that can affect any part of the digestive tract, joints, and eyes. There is no cure, only treatment to hopefully get to remission. I lost nearly 30 pounds in a few months, and the pain was unbearable. I almost had a ruptured intestine which would have likely led to septic shock. But I didn’t, I had life changing surgery at the period of your life when everything is changing very quickly.
My road ahead would not only include recovery from surgery, but also continual blood work for the next six to nine months to monitor my liver, kidney and blood counts to ensure that I would not develop any of the unwanted side effects from an immunosuppressant. I got sick often with sinus infections, and strep throat, but I am in college and doing well, making friends and growing up with an invisible disease.
Flash forward a few years, and I lobby on Capitol Hill for patients of Inflammatory Bowel Disease, and meet some of the strongest people I have ever met through the Crohn’s and Colitis Foundation of America. I am doing well on my medication, and on time to graduate with my Bachelor’s degree in Forensic Chemistry. My friends are great, and don’t care that I can’t have the hot wings or salad at dinner, and always make sure if we are having a get together that there is something I can eat.
Skip ahead a few more years, and I am graduated with my BS and starting a new Master’s program in Analytical Chemistry. I have worked a few different types of jobs, ranging from a drive in movie theater to a high tech laboratory, and really have been feeling well despite an increase in my immunosuppressant to attempt to get me back into remission. Graduation comes and goes, and soon I enter my new current journey, for my PhD in Chemistry at Temple University.
Looking back, it is almost silly how terrified I was when I was first diagnosed. I led a normal college life, easily making friends and keeping in touch with many over the last decade. I wasn’t always in remission and had a few scares with blood work, but overall this invisible disease has been that, relatively invisible. I get tired more often than other 27 year olds, and if I get a cold, I am typically sick for a week or two, but these are all manageable things. Just because they are manageable doesn’t mean it is easy, you could have instances when friends want to get together but you can’t because you are literally so exhausted from the week that you just stay home and sleep, or you get sick quickly at work because some bug is going around and need to take time off. It is frustrating that is for sure, but I am happy that I have done what I have up to this point in my life. I thought this disease was going to ruin my life, but I have been able to live and love and laugh despite having a chronic illness. Things changed unexpectedly in March 2008 but that doesn’t stop me from living my life to the fullest, and if you have an invisible or visible disease, it shouldn’t stop you either.
Yes, some days are hard, but you’ll get through it with the help of your family and friends. Sometimes, you’ll need to take that sick day because you have the worst cold that year and here is the breaking news: it is okay! Knowing your limitations with your disease is something that is important to learn and manage with time and stress levels always changing, but you can do it. I never thought I would have to worry about being the sick person or knowing where the closest bathroom is, but I have been doing it for nearly a decade, and things honestly, it just became second nature to me.
So whether you have a chronic illness, or have a family member or friend that has one, know that everyone’s journey is different. Some people have harder times coming to grasp with a diagnosis or daily symptoms, so don’t compare yourself to other people. Your journey is YOUR journey. If you are looking for support outside the seemingly healthy and clueless people that are your friends and family, consider looking for a support group, or better yet create one yourself. One of the most difficult things to remember if you have an invisible disease is that it is invisible. You may feel it every day, but others don’t that is why you need to be your own advocate, and your best friend when dealing with the disease. Whether you are just starting the journey as an invisible disease warrior, or have been at it for years, just take satisfaction in your daily accomplishments, no matter how small or large, and most importantly remember you’re not alone.
