As I sat among my peers during a college study group, I secretly tucked my hand inside my zippered UC Davis sweatshirt and gently massaged my aching stomach.
“Who knows the answer to question B?” a classmate asked …
I raised my free hand and confidently answered the question, almost forgetting about my throbbing abdomen.
Throughout college I was a straight A student. I enjoyed school. My studies not only made me feel purposeful and accomplished, but they distracted me from my uncomfortable body sensations. When my mind was busy memorizing and critically thinking, I disconnected from my chronic pains and traumatic home life and found a way to survive living with myself, inside my body.
However, my escapes from the stress, gurgles, gas, bloating, painful memories and stinging bowel movements were short-lived. Reoccurring worries swarmed my mind constantly. As soon as my distraction ceased, I went right back to asking, “What is wrong with me? Am I going to die? Why can’t my doctors help me?”
Chronic Illness Invades My Identity and Steals My Hope
My college years were full of health crises and doctors’ visits. By the time I was 20, I had seen specialists for each of my body parts. Worse yet, every “expert” labeled me with harmful diagnoses that negatively shaped my self-worth and identity.
I entered my 30s believing I was broken and defective. When medical experts finally found a diagnostic category — they felt “autoimmune disease” best described my symptoms — I felt vindicated. Finally, I released myself from the “crazy” category and joined the thousands of people living with gut-based disorders, and in my case, Crohn’s disease. Now I believed I did not have to exhaust myself by exploring solutions from within my entire body. Instead, I had one body part, the gastrointestinal tract, to focus my attention and guide my treatment.
Looking back, I did not realize that this one-dimensional view of my body would cause me many problems along the way to healing. It took me many years of painful trial and errors before I felt confident enough to understand and embrace holistic approaches to autoimmunity and Crohn’s disease. My old belief systems were deeply engrained and reinforced by my family, community and mainstream society: I should believe everything my doctors told me.
Gradually my perspective began to shift. Locked in a vicious cycle of illness, the more I relied on the conventional medical system, the sicker I became. Meanwhile the Crohn’s disease label consumed my identity and replaced my name, interests and hope. I recall introducing myself as, “Hi, I have Crohn’s disease.”
Over time, I forgot how much life I still held inside of me.
Using The Past to Heal the Future
Today I am on the road to true healing. I feel stronger every day of my life. I have had many years to reflect on the past and understand my history and decisions that sent me into a vicious cycle of physical and mental illness. Today, I clearly recognize the biggest mistake that contributed to my downward health spiral: Believing my doctors were better experts on my body than myself.
When I surrendered my body and mind to medical institutions and statistics, I also embraced my physicians’ prophecies of doom. I accepted that my “mysterious“ symptoms were incurable. I believed my body hated me so badly that it intentionally produced symptoms in order to keep me from experiencing prime moments in my life.
I got lost in negative thoughts as I obsessed over the potentially terrible things I must have done to deserve the misery of emergency room visits, antibiotic overload, medical debt and painful exploratory procedures. I lived feeling like a victim entertaining the self-deprecating question: “Why me?”
Twenty years have passed since I sat in the library worrying and massaging my abdomen. However, just like me, many college students suffer from chronic illnesses. Studies show that chronic illness is on the rise and disproportionately plaguing Millennials (born 1981–1996). Not only does this group have more stress, but they also have more autoimmune disorders and mental health conditions than prior generations.
Looking back on my college years, I wish my younger self knew then what I know now. I might have started healing earlier and avoided some painful medical mishaps.
Thankfully, I know it is never too late to start a new path for healing.
Empowered Over Illness
Today, even though I still live with Crohn’s disease, I feel entirely different about chronic illness. First and foremost, I have a plan for my healing. Second, I have hope. Finally, I feel empowered over illness because I know am not at the mercy of my body’s supposed diabolical plan or my physician’s ultimatums. In fact, the situation is quite the opposite. Over time, my body has become my friend and guide toward healing.
The lessons I have learned from living with Crohn’s disease and chronic illness are now available for me to share with all of you who might be in the same state of mind and physical health I was some 20 years ago.
In the next few blogs, I will share with you what I learned about living with autoimmune disease and trauma. You might be surprised I threw in the trauma word since we were just talking about illness. But illness and childhood trauma are intricately connected. We must have candid discussions about how our past histories and adverse childhood experiences (ACEs) affect our health.
Ultimately, I will encourage you to become an expert on your own body and to embrace integrative approaches for healing. Once you accept your unique body and history, then you can develop an individualized treatment plan.
I will not encourage you to take another pill or disconnect your mind from your body, as I did in the library 20 years ago.
Before we begin with a plan for living with chronic illness and healing, there are some damaging beliefs that you must rid yourselves of immediately. Once you open your mind to the possibility that some of your beliefs about health are harmful then, you open your mind to the possibilities that lie ahead for your healing.
I encourage you to rid yourself of the 10 following messages:
- Your disease is incurable.
- Your disease will get progressively worse over your lifespan.
- It isn’t a matter of if you will have surgery to remove part or all of your organs, it is a matter of when.
- The only answer is immunosuppressant drugs and pharmaceutical drugs.
- Eat whatever you want — diet doesn’t matter.
- Trust your doctor since they are the experts and know more than you.
- Never challenge conventional medicine — after all, studies and statistics are the complete truth.
- Follow what works for other people because these methods will work for you, too.
- Disease is merely physical — treat the symptom and you will feel better.
- Your symptoms are all in your head. You are hysterical or crazy
Pave the Way for New Perspectives
Chronic illness is miserable. Whether you have Crohn’s disease or any other type of autoimmune disease or health condition, many of us share the same struggles. Too many people allow a diagnosis to define their health trajectory.
Even though a diagnosis helps you form a treatment plan by giving you a focus for interventions, most of the interventions that helped my healing weren’t specific to my diagnosis of Crohn’s Disease. I learned a new way of living, thinking, breathing and accepting that applies to all health problems and wellness in general.
Healing for me has incorporated a shift in my perspective and a willingness to listen to what my body needs and has been asking me to give it for a long time. Stay tuned for my next article about these integrative approaches that can help defeat chronic illness.
Casey Hersch, MSW, LCSW, is a licensed clinical social worker, author, and founder of www.lightyoursparkle.life. She specializes in integrative treatment models for chronic illness. Inspired by her own struggles with autoimmune illnesses and trauma, she educates about empowerment and how to build individualized healing plans.