Post by Sarah Bouchard. Sarah is the Interactive Marketing Coordinator for Rex Healthcare.
In my role as Interactive Marketing Coordinator here at Rex, I interact with patients every day, both directly and indirectly. Whether it’s engaging with people on the Rex facebook page, or publishing patient video stories on the pages of rexhealth.com, I share a common passion with my colleagues for enhancing the patient care experience and making a difference in people’s lives. All of us who work in healthcare are motivated by different things and a big one for me is my perspective from the other side—as a patient with a chronic disease that I’ve been battling for the past twelve years.
Waking up groggy from my very first colonoscopy in November 2000, all I could think about was eating some real food. A few minutes later, my doctor informed my mother and I of the news. I had severe crohns disease, chronic gastritis and a stricture in my colon. The colonoscopy was not even considered a success because my colon was essentially closed up. The 14 year old me laying on the gurney wasn’t really phased. I had no idea what that meant. But there’s a reason why my mother sobbed once she heard the diagnosis—she knew I would have to deal with this for the rest of my life.
Crohn’s disease is an autoimmune disorder that causes inflammation in the digestive tract, with most cases being in the small and large intestines. It can be hereditary, but it wasn’t in my case. Thanks to my extraordinary doctors and balance of medications, I have been in remission for the majority of the past twelve years. But after so many doctor visits, medications, procedures and hospital stays, it can take a toll on you.
If you or someone you love is suffering from a chronic illness, here are a few lessons I’ve learned along the way that could maybe help you cope too.
Create a support system. It could be your significant other, your therapist, your mom, your best friend or someone else who is going through a similar health struggle—just as long as it is someone who is compassionate and cares about your overall well-being. When you are coping with a chronic illness, you need to be able to share your ups and downs on a regular basis. And never underestimate the love and support you can get from animals!
Educate yourself and others. Some people will jump to conclusions about your disease just by the name of it. When I tell people I have Crohn’s, I often get ‘isn’t that the poop disease?’ or ‘you just watch what you eat, right?’ Try not to take it personally. They don’t know what you’ve been through and need to be educated with the facts. If you don’t know something, ask your doctor so you know what to say for the next time questions come up. (Remember: the internet has a million answers, your doctor knows your condition.)
Don’t give into peer pressure. Your friends and co-workers won’t always understand what you’re going through. Stand your ground and set boundaries for yourself. I often have to miss out on social events because I’m too fatigued from going out the night before. Come to terms with your restrictions and put your body and your health first.
Take your meds to-go. I have found it is the easiest to bring my medications with me wherever I go, since I so easily forget to take them in the morning. Once I’m settled at work, and it pops in my head, they are right there. No fretting of missing a dose.
Don’t push yourself too hard. Constantly not feeling well can sometimes make you undermine or overlook less severe symptoms. I often think ‘well I’m not as sick as I have been, so I should be able to suck it up and carry on normally’. Try to view yourself objectively as you can. Tell yourself if anyone else felt this way, they would go home from work, skip the gym or take a break from house chores too. Cut yourself some slack!
Manage your pain. Make a game-plan for when you are feeling bad. My go-to thing when I am feeling ‘crohny’ is to take a hot bath and listen to classical music. Although it doesn’t make my disease go away, it helps get me through the current episode. It might be as simple as laying down and turning off all the lights or taking a certain kind of medication your doctor prescribed. Any way you do it, you are taking a step towards feeling better rather than pushing yourself into more pain.
Be open. In the beginning, I felt the need to keep my disease a secret. I didn’t want others to judge me or think I’m different. But when you feel comfortable enough to talk about it, sharing your disease or experience with others is a great way to get support. You’d be surprised how often someone knows a friend or family member who has what you have or something similar. It can really give you that small-world reminder of ‘everybody’s got something’.
Most importantly, don’t let your illness define you. You are NOT your disease.
It will, however, continue to help make you into a stronger person. So stand tall, and be proud of yourself for facing challenges on a regular basis. We are a lot stronger than we give ourselves credit for!