Illness as a growth experience

Written by Alexandra Nash 

I’ve chosen to go ahead and share my story because I think it’s really valuable. Sharing an experience is good for the person who shares and for the people reading, especially those who can resonate with what is said. I was diagnosed with Crohn’s disease in October 2022 after a period of progressively worsening health.

It began with what I thought was a gastro virus towards the end of July which lingered for a while, settled down to just tiredness, then returned with a vengeance. Red flags well and truly appeared when I was going to the toilet between 12 and 15 times per day. At times I couldn’t stand straight or comfortably sleep due to abdominal pain; in the morning I couldn’t walk from my bed to the bathroom without holding the walls because my joints were so sore, and my feet were swollen. Finding the energy for a shower was a big task on many nights and my mouth was, at times, riddled with ulcers. The biggest change from my usual self was that I couldn’t bear the thought of doing any exercise. I am usually a very active person and I exercise every day. I also attempted to keep socialising until I couldn’t.

The month or so preceding the diagnosis was probably the worst and I was making an effort to downplay how I was feeling about a potential worst-case scenario. My GP called for an urgent review when an inflammation marker came back at 2050 (the normal level is  <50). Considering this, finally getting a diagnosis of Crohn’s that was non-life threatening was mostly a relief. I initially saw the diagnosis objectively and shielded myself from the emotional side of things. In hindsight, I think that was because my body and mind couldn’t handle any extra load. The tears eventually came out when they needed to and to work through that, I read about other people’s experiences with inflammatory bowel disease. In doing so, I felt far less alone and was reassured that I’d eventually return to good health.

I guess the heart of this story is the ensuing growth and positive changes that have happened. A lot has changed in the way I live, in the way I think, and I’m determined not to let this diagnosis interrupt my ability to live a full and meaningful life. I truly understand that it’s hard to know what it feels like to be very ill if you haven’t been in that situation. I feel lucky to genuinely appreciate the comparison between sickness and health because it gives me a greater capacity for empathy and gratitude. I remind myself to never take for granted every day that I’m healthy. Modern medicine and healthcare professionals really are wonderful. One of my doctors encouraged me to join a support group – to open the dialogue, to share and to listen. I have realised so far, active inflammatory bowel disease can be very intense and long-term remission requires continual commitment to self-care and adherence with treatment.

Like many other illnesses, even the experts don’t know the precise causes of Crohn’s disease. I have no doubt that my mental state has had some influence. While I know myself best, I may be completely wrong. Some episodes of anxiety in the years preceding diagnosis were so paralysing, it felt like an assault to the digestive system.

Being diagnosed with Crohn’s disease has led to me taking assertive action to improve my mental health. I have started to make sense of and resolve pain from the past which has led to a lot of new learning. I now honour myself, set clear principles and boundaries and surround myself with people and situations that enrich my life. I encourage everyone to do this. My diet has been very good for a long time, although the dietary recommendations for Crohn’s disease have enhanced my nutritional intake. Basically, eating foods as close to their natural state as possible has made me feel even better than pre-Crohn’s days. I don’t drink alcohol anymore and I don’t think I’ll drink again if it means there’s a risk of relapse.

I’d describe Crohn’s disease as a silent and violent condition. Despite a fair bit of weight loss, I looked okay during the active stage of disease, yet I felt terrible inside. This highlights the very important point that we never know what someone is going through unless they choose to tell us. And there is immense power in sharing our stories, providing it’s the right time to do so.