Advice for the Newly Diagnosed

So you just found out you’ve been diagnosed with a chronic illness. What now? Maybe you don’t know your diagnosis yet, but you suffer with debilitating symptoms and chronic pain? For many IBD patients, it can take months, even years, to receive a proper diagnosis. You are often left wondering, “What’s wrong with me?” and “Why can’t I be like a normal person?” These are thoughts that plagued my mind before and after I received my diagnosis.

Photo by Anthony Tran on Unsplash

I first started showing symptoms of ulcerative colitis when I returned from a study abroad trip to Spain. I thought I was having trouble readjusting to American food, but my symptoms persisted for a couple of months on and off. Eventually, my symptoms got so bad that I began to see blood in my stool and had constant diarrhea. I began to lose weight and lose my appetite. I went to see a gastroenterologist and they decided to test me for gluten, dairy and fructose allergies. All negative.

I was told I needed to get a colonoscopy, but because it was around the holidays they had no open appointments for procedures. I had to wait one month to get the colonoscopy. That one month felt like a LIFETIME. My condition only got worse and I lost about ten pounds, which for somebody small like me was a lot. I am so lucky that I only had to wait one month to receive a proper diagnosis. Some patients wait years and I could not imagine waiting another month without any solution.

When I heard the words “ulcerative colitis,” I honestly had no idea what it meant. I had heard of the condition before because my uncle has it, but never truly understood what it entailed. I had a long road ahead of me. Medication, diet change, lifestyle change. This became my new normal. For the first few months, I felt really alone. I was going through the stages of grief, which you can read about in my previous blog post. I was too scared to tell my friends what was going on out of fear of being judged. Poop isn’t really a great conversation starter. I was trying to pretend like everything was normal because I did not want to admit that I had a chronic disease. It sounds so scary and daunting! This article from Harvard Health talks about steps for coping with chronic illness which correlates to the approach I took after being diagnosed.

My GI doctor told me something recently that really resonated with me and was something I wish I had heard as a recently diagnosed patient. He told me, “There are many people sitting at your table.” Think about this for a minute. Imagine you are sitting at a big table and all the seats are empty. You feel alone, right? But imagine all those seats are filled with the people you love – your friends, family, significant other. Those are the people sitting at your table, even if you do not see them all the time. Those people are there to support you and help you live as normal of a life as possible.

So no, nothing is wrong with you and yes, you can be a normal person (if normal even exists?). You just have to adapt. The vision I had for my life at the age of 20 is completely different from the vision I have now at age 23. Things change. It is up to you to adapt to the circumstances, all while not missing out on what life has to offer. My journey has not been linear, and yours probably will not be either, but that is what makes life interesting. Take it day by day, stay positive and be resilient! There is light at the end of the tunnel.

Who do you see sitting at your table?

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