I have been living with Crohn’s disease since 2007.
Ziyad
Living with Crohn's
At diagnosis, I went through a mixture of emotions which did include relief but there were also the negative thoughts. ‘Why me?’, ‘what did I do to deserve this?’ and ‘is this what life is going to be like now?’.
As an Arab and a Muslim, my diagnosis challenged me to navigate the stigma around mental health and chronic illnesses that is not only linked with my culture, but wider society and others as well.
The stigma that can stem from cultural and religious teachings causes some people to feel that they would bring shame and dishonour to their family. They might be afraid of being rejected by family members who have an ‘old school’ or more traditional mindset on invisible illnesses.
Feelings from this stigmatisation can become internalized and lead to isolation, depression, and anxiety. Some hide their condition to avoid bringing shame to their families or being outcast by their community.
Always having to have a ‘cool guy’ persona prevented me from talking about how my Crohn’s really made me feel.
I feel fortunate enough to not have experienced this in either my family, who encourage speaking about mental health, or the Arab community in my area. However, I did feel the stereotype that teenage guys shouldn’t speak about their emotions.
While I now feel comfortable enough to talk about my Crohn’s and how it did impact on my mental health when I was younger, others may not.
I was taught that if you do good in life good things will happen, and vice versa.
Because of this, I remember how I couldn’t shake the feeling that I must have done something wrong to have Crohn’s. This feeling was in part the reason why I never really spoke about my Crohn’s.
I didn’t want others to think what I thought; that my Crohn’s was punishment from God to atone for bad behaviour.
There are also feelings of embarrassment.
I knew the stigma around invisible illness was not only in my culture and could never get over the feeling that my Crohn’s made me feel ‘dirty’.
My faith teaches the importance of purity and cleanliness within our public and spiritual conduct, which is symbolised when we perform Wudu, washing and cleansing parts of the body, before we pray.
My understanding of the condition back then was that it was just a ‘pooing disease’.
It sounds silly but having Crohn’s made me feel impure and dirty. However, the longer you live with Crohn’s or Colitis, the more you realise it is much more than just a ‘pooing disease’, especially when it comes to the impact on both your physical and mental health.
Mental health is not just about feelings of anxiety and depression.
It encompasses body image, eating disorders, post-traumatic stress, and sleep problems. As Crohn’s and Colitis are life-long, there can be an increased risk of depression in those who do struggle to come to terms with their diagnosis, having gone from ‘healthy’ to chronically ill. The unpredictability of the disease causes many of us to choose the safer option of not leaving the house due to the worry about public toilet availability.
There are also concerns over body image which isn’t helped by the display of the ‘perfect body’ on social media and the use of photoshop. Body image dissatisfaction can be related to side-effects of medication such as hair loss, weight gain or ‘moon-face’ from steroids, scars from surgery and symptoms outside of the gut.
My Crohn’s has made me struggle with all of this.
Going from a healthy teenager to suddenly being in and out of hospital and my body changing due to medications. There are emotional and physical scars from surgery and an eating disorder I developed pre-diagnosis because I associated food with pain. Developing negative thoughts and feelings towards foods like this can cause what is known as maladaptive attitudes towards food and can include anxiety, skipping or restricting meals.
Personally, I feel one of the most difficult things to manage is the impact of post-traumatic stress disorder (PTSD). This can display as negative thoughts and feelings, avoidance or withdrawal from social situations, and flashbacks to a difficult time.
It is often associated with the military, but those of us with Crohn’s or Colitis who can experience too
It may be due to near misses of accidents in public, reactions to medication or constant hospital visits, regardless of if it is a routine appointment or emergency admission. These visits can be constant reminder of the bad experiences from when our condition was at its worst. PTSD can impact future social events by causing us to feel trapped by having to re-experience these triggers of trauma.
I look back on my journey and wonder if any of my feelings and thoughts about Crohn’s were influenced by my culture and religious beliefs?
I’m not sure, but it is a possibility. However, my faith also teaches me that God doesn’t give a person a burden that they can’t bear. I believe things happen for a reason even though we may not realise it at the time.
I find comfort in the knowledge that I was chosen to have Crohn’s because I have the inner strength to deal with it, even on those days where I feel defeated. It has also given me an opportunity help others and to be part of a community that has so much strength, unity, and compassion for each other.
The Crohn’s and Colitis community inspires me every day to become more and more open.
I share my journey not for the sympathy but to help that one person who was in the same position as I was. The person who didn’t know if things would get better or not.
Well, even though it takes time, and everyone’s journey is different, things do get better and there is always help available.
All you need to do is take that simple step of just asking for help.
