Mental Health Resources are Lacking for Young Adults with IBD | Savannah Snyder’s Story
Crohn’s and Colitis Young Adult Network
My story with Inflammatory Bowel Disease (IBD, Crohn’s disease and ulcerative colitis) and mental health is, unfortunately, not an anomaly. At twenty-one years old, I was diagnosed with Crohn’s disease during my fourth year of university after an intense disease flare-up that left me hospitalized for a week. At the time, incredibly challenging words to hear were “You have a chronic illness.” Receiving a life-long diagnosis left me feeling vulnerable, alone, and scared – emotions I was not prepared to deal with.
As I learned to navigate my chronic illness, I faced a series of challenges that were frightening and isolating. Leaving the hospital, I only received a gastroenterologist (GI) referral. I was left in the dark about different areas of care that would benefit me as I adjusted to my new diagnosis. I was bedridden for months, with my symptoms too severe to attend school or participate in social events. Attending social gatherings such as going to bars, restaurants, and parties was not feasible. I was on a restrictive diet, making it incredibly difficult to go out to eat.
I was required to withdraw from school for the year and return to my family home, missing my final year of university with my friends. All these new challenges I was facing were terrifying. I quickly began to isolate myself and felt as though no one could understand what I was going through. My life was changing so rapidly. I was regularly too fatigued to go out for the day or, if I could muster up the energy, I’d worry about being too far away from a washroom.
Then the steroids I was taking to manage my condition started to take their toll. Looking in the mirror, I watched the physical side effects of drugs alter my appearance and no longer saw my old self.
Roadblocks made accessing mental health services a challenge
Months after my diagnosis and suffering in silence, I began to explore mental health therapy. I truly just wanted a place to talk without people pretending they understood what I was experiencing or dismissing my feelings. Accessible mental health care was sparse, as it still is today, and I was left to navigate my mental health care alone.
Researching therapists revealed how shockingly high the costs for services would be. Additionally, I had an extremely difficult time finding a therapist that specializes in chronic illness and was aware of what IBD even was. To add insult to injury, since I didn’t have a specific diagnosed mental health disorder, this also proved to be an additional barrier to care.
Cost, access, and lack of diagnoses related to the mental burden of navigating a chronic illness leave many patients, like me, struggling to get the mental health care that we truly need to thrive.
Therapy changed the course of my IBD experience
After six long months, thankfully, I finally found a therapist who could help me work through the mental side of IBD. I was able to work with my therapist to practice grounding exercises that I could implement when I experienced anxiety, work on journal entries to help release my negative thoughts and focus on positive ones, and learn how to focus on what I can control, rather than what I cannot control, with IBD.
I have learned that my IBD symptoms worsen when I experience stress, and I am thankful that I found a mental health support team to allow me to lessen the stresses I experience from my sickness. Although I do not have a diagnosed mental health disorder, having mental support has become a critical part of my treatment plan.
Managing a chronic illness can impact mental health
Living with a chronic illness, especially one as serious as IBD, can take a mental toll on anyone. It’s common to have a medical team consisting of gastroenterologists, colorectal surgeons, rheumatologists, dieticians, etc. However, an important neglected piece of the healthcare puzzle includes professionals that specialize in mental health.
I learned that there is truly a hole in the healthcare system, where some doctors are unaware of the importance of mental health and/or not equipped with the tools to refer patients to counselors or therapists unless they have a clear and pre-diagnosed mental health disorder.
Furthermore, those who suffer from a chronic illness without a diagnosed mental health disorder are often forgotten and left behind to deal with the mental suffering of their symptoms and how their illness affects their lives without proper support and resources.
Jaw-dropping research shows that young people between the ages of 15 and 30 living with a chronic illness are three times more likely to attempt suicide than their healthy peers, demonstrating how crucial mental care is among young adults with chronic illness diagnoses.
Young adults with IBD need mental health resources
Young adults with chronic illness are undergoing many challenging and pivotal transitions in their lives, whether it be starting or graduating school, joining the workforce, or figuring out their identity. This is a time of your life when young adults socialize with friends and colleagues and be “on the go” — all of which are extremely difficult demands to meet while dealing with untreated mental struggles.
The past two and a half years living with Crohn’s disease has presented intense challenges that I was completely unprepared to handle, ranging from general stress, fear of foods, low quality of life, fear of accidents, and medical post-traumatic stress disorder (PTSD).
The negative stigma and lack of knowledge around treating mental health without a diagnosis is a worldwide problem that needs to be addressed in order to empower young adults with IBD. Mental health support, including accessible therapy and counseling, is a pressing need for young adults with IBD.
Bridging the mental health gap
Healthcare professionals must understand the importance of focusing on patients’ mental health after undergoing traumatic medical experiences, whether that be a chronic illness diagnosis, surgery, a flare, or trouble managing day-to-day life. It is a necessity that IBD healthcare practitioners be made aware of the need to support patients in mental health and contribute to bridging the gap that exists between chronic illness and mental health services.
Patients need to feel supported and encouraged to address their mental health with a qualified professional enabling patients to feel in control and work towards improving overall quality of life, something I have benefited from firsthand with the help of therapy.
Trellus Health is providing critical resources to enable people to access mental health support and receive the treatment they need. Along with Trellus, the Crohn’s and Colitis Young Adult Network (CCYAN) is providing accessible resources to reduce the burden of finding mental health care for young adults with IBD.
Thankfully, organizations like these are working to bridge the mental health gap in chronically ill patients. While also breaking down barriers and the social stigma that surrounds therapy, they are providing crucial support to improve the quality of life for young adults with chronic illness — something I desperately wish I had when I first heard those life-changing words that day in the hospital.
About the Author
Savannah Snyder is a 2020–2021 fellow of the Crohn’s and Colitis Young Adult Network, dedicated to advocacy, spreading awareness, and providing support and resources internationally for young adults with IBD.
Savannah was diagnosed with Crohn’s disease in 2018 during her fourth year of university. Savannah resides near Toronto, Canada, and is currently working towards her law degree where she is passionate about making a career in the field of advocacy.