The Effects of Chronic Disease on Mental Health None of My Doctors Have Discussed

I can vividly remember the day I was diagnosed. I was still heavily sedated from my first colonoscopy when my gastroenterologist came to my bedside, sat down, rubbed my shoulder and said I “without a doubt” have severe Crohn’s disease, and he will schedule a future appointment with me to discuss treatment options. In the days and weeks to follow, I spoke with him and his PA multiple times about everything from disease prognosis, to medications and treatments, to diet and lifestyle changes. Now, I don’t know about you, and I certainly can’t speak for everyone’s patient story, but one thing that has still never been discussed by any doctor I’ve seen, is the effects of chronic disease on mental health.

Over the last few years, I’ve noticed a decline in my mental health. I get angry more quickly, I get unreasonably sad over seemingly small things, and I increasingly have periods where the smallest setback will feel like my world is crashing down.

While my current emotional state may be partially attributed to those wretched postpartum hormones, I know a lot of the thoughts that come with those feelings are not. I can look at my son and become so overjoyed with emotion that I tear up — which most mothers would argue is 100 percent normal. But there are also times when I look at my son, and I’m so overcome with anxiety and guilt because of my disease that I can barely breathe.

Like when he was just a few months old, and I couldn’t nurse for 24 hours after a contrast MRI, so I spent the next several months obsessively pumping, convinced that I was going to have to go to the hospital at some point and my son would be stranded without any breastmilk.

Like the countless days that I’m stuck in the bathroom while home alone, and he’s crying out from his crib wondering where I am.

Like the past two weeks when my fatigue has been so bad that I get out of breath just from rocking him to sleep at night.

Prior to being diagnosed, all of my ailments (both physical and mental) were temporary. Depression and anxiety are no stranger to me, but I feel everyone battles with them at some point in their life. These feelings usually revolved around isolated incidents that would fade with time, wine and puppy snuggles. Everything was temporary; everything could be fixed; everything would eventually end. It’s easy to feel better when you adopt the optimism-fueled mantra, “Tomorrow will be better.”

But this new ailment was anything but temporary, and my “tomorrow” was being diagnosed with Crohn’s disease. This wasn’t something I could “fix” by psyching myself up, or eating healthier, or working out. This was a permanent disease that would stay with me the rest of my life. My “tomorrow” was filled with a diagnosis, and then a treatment plan with a long list of side effects, and then most tests, and then remission, and now endlessly scrutinizing every twinge and ache fearing that I’m not in remission anymore. Chronic illness will follow me for the rest of my life and unfortunately, no amount of wine or puppy snuggles can fix it (trust me, I tried. I worked at an animal shelter for three years and may have broken the Guinness Book of World Records for highest number of puppies snuggled in any given time frame).

Before I had my son, I felt like I could push these anxieties to the back of my mind because I wasn’t responsible for anyone else but myself. But now my entire life revolves around this tiny helpless being. I am in clinical remission, but every day is still a struggle to stay there and ensure my treatment plan does what it’s supposed to.

I feel very fortunate that my quality of life is good. I have a loving and supportive family. I was blessed with the most amazing job of motherhood, in addition to my previous full-time employer keeping me on as a remote, part-time employee since having my son. I have a wonderful medical team who listens to me and works very hard to ensure I receive the treatment needed to live a healthy, happy and active life.

But those feelings are still there and they are still overwhelming and hard to put into words. When I was diagnosed, no one told me I would spend the rest of my life stressing about my condition. No one told me I would panic at every little ache or pain, wondering if it was the beginning of a flare-up or worse. No one told me I would have to rearrange my life (and subsequently the life of those around me) to accommodate my disease. No one told me that depression and anxiety are one of the most common “extraintestinal manifestations” of Crohn’s disease, ulcerative colitis and many other chronic illnesses. No one told me to expect this, and no one told me how to deal with it.

I’ve been diagnosed for three years, and I can’t imagine how others must be feeling after 10, 20 or 30 years. Sometimes I wonder how long I can do this, and then reality hits me that I have no choice and I have to learn how to cope without taking my “why me” anger and my “what if” anxieties out on others. The more I research and reach out to others with chronic illness, the more I realize how common these feelings are and how much support there is for those who seek it out.

If you’re struggling, know that there is help out there and you can start by following these easy steps:

1. First and foremost: Remind yourself that these feelings are completely warranted and normal. You are not alone in your struggle. You are doing the best you can and there are others here who want to support you. Join your local Crohn’s & Colitis Foundation chapter or support group. Reach out to Crohn’s and Colitis warriors on social media. There are quite a few now and they often have great resources for help!

2. Tell your friends and family that you are struggling. They love you and want to help you. Yes, mental health sometimes has a stigma attached to it, but it’s getting better and the more we talk about it, the more widely accepted it will be. Being open and honest about your struggles can not only be healing in itself, but it can provide support for others who may be afraid to seek help.

3. If you don’t feel like you can talk to friends or family members, seek technological assistance. The beauty of living in 2018 is realizing that we have instant help at our fingertips. Meditation apps like Headspace can be fantastic with dealing with anxiety, or if you’d like professional therapy, apps like Talkspace or websites like BetterHelp allow you to speak with a trained therapist anonymously and affordably.

You’re allowed to feel sad or mad or anxious about your life with chronic illness, and don’t let anyone tell you otherwise. You’re not being a “pessimist,” and you don’t have to be “grateful it’s not worse.” Say your feelings out loud. Give them air to breathe so that you can begin to heal. Don’t suffer in silence because there are a lot of people in this world who love you and want to see you thrive.