Overcoming Stigma: Kate Tyler on life with congenital anomalies and finding self-acceptance

Kate Tyler reflects on her journey living with multiple rare congenital anomalies in the UK in this interview led by Concha Mayo, EURORDIS’ Mental Health & Wellbeing Engagement Manager.

Kate opens up about the challenges she faced growing up, including physical and emotional struggles, the anxiety tied to managing her condition, and the strain it placed on her family relationships. She discusses the isolation she felt, but also the life-changing impact of finding connection and support.

Kate’s story underscores the vital role of self-compassion, the value of sharing experiences, and the strength that can be found in building a supportive community. Her journey to self-acceptance serves as a powerful testament to the endurance displayed by those living with a rare condition as they navigate the stigmas and complexities that life may face them with.

Kate Tyler’s testimony

Mental health – the heavy burden of difference

I was born with several rare congenital anomalies and had four major operations on my oesophagus, trachea, rectum and bowel in the first five days of my life.

Throughout my childhood, I was acutely aware of how different I was, not just from my siblings, but from other children as well. I was powerless to manage my continence, I struggled with chronic constipation, bowel management, and the symptoms of pain and sickness that go with it.

“Will I get to the toilet on time? What happens if I don’t? What will happen if I have an accident?”

These practical concerns plagued my thoughts, creating a pervasive anxiety that touched every aspect of my life.

The constant worry left me feeling defeated and constantly at odds with my parents and the professionals looking after me. There was a wall behind which I stored my differences; a place where the loss of control, fear, pain, and the indignity of medically invasive treatments from my early life were firmly locked away.

It wasn’t until my sixties that I began to shed the cloak of embarrassment and shame, along with the heavy weight of anxiety and constant worry about bodily functions.

Family dynamics and relationships

The impact on my family was profound. My Mum saw me for the first time when I was three weeks old. She was advised not to bond with me because I was more than likely going to die.

It was very hard for my parents too; they were just 17 years old, they did their best with very little support from professionals. They were told by the surgeons I was “fixed”.  In those days there was very little information for families and certainly no way to ask for a second opinion.

My siblings had their own struggles with my health and worried during my hospital stays, but our bond was and remains very strong. Communicating about my condition within the family has been challenging. It was as if we could not discuss it because we did not want Mum to get emotional or feel any guilt about my malformations.

Finding support and connection

When you have a rare and complex condition, you have to dig deep within your soul to keep going. Some days it was very hard. My support came from within myself and from my husband, whom I met when I was 19.

His support was crucial, especially when facing difficult realities. I was told I would not be able to have children, but we adopted two sisters. For years, I felt isolated in my experience. But then, something changed.

When I heard Greg Ryan’s story (from the Onein5000 Foundation) and started to share my experience, I realised I was not alone in this. This revelation was transformative, opening up a world of shared experiences and understanding.

Coping strategies and self-care

My husband reminds me that I often say, “There is always someone who has it worse.” In reality, sometimes there is not, and I feel quite overwhelmed. While this mindset can be helpful to gain perspective, I learned that it can also diminish my own struggles. I need to acknowledge my feelings and allow myself to have down days without guilt. Taking care of myself is essential for my mental wellbeing. Activities that help me are counselling and therapeutic massage. I also find joy in being in my garden growing things, particularly from seeds and cuttings – I guess I find it nurturing. I also do a lot of entertaining, and I love baking for my friends. All these things significantly enhance my mental health.

The journey to self-acceptance

As I have grown older, I have come to appreciate the importance of understanding and sharing. I would recommend to others facing similar challenges to find out as much information as they can about their condition. Knowledge empowers you and helps you manage your condition.

Sharing your story, your lived experience, and raising awareness can help others find their voice and also help them develop self-advocacy skills.

I think connecting and helping others has helped me to heal. Self-compassion allows you to take care of your inner child and acknowledge the challenges while also celebrating the strengths and joys in life.

I am comfortable in my own skin and at peace with it now. I have a very good balance in my life, although it took time to get here. I often wonder how different things might have been if I had had connections earlier. If I had known someone born with the same conditions and facing the same challenges in childhood, I would have been better able to cope and understand it more. But with time, understanding, support, and self-acceptance, it is possible to find peace of mind and purpose despite the difficulties.

Over the coming weeks and months, EURORDIS will continue publishing testimonies obtained from advocates living with a rare disease who have kindly shared with us their experiences of the impact of having a rare disease on mental wellbeing and their hopes for the future.

If you would be willing to share your own personal story as one of our testimony please contact Matt Bolz-Johnson, our Mental Health & Wellbeing Lead, at matt.johnson@eurordis.org.

Our last testimony was from Sophie Turner, who shared with us her journey with dwarfism, advocacy, and self-identity.

Visit our Mental Health & Wellbeing webpage to read upcoming articles from our series of testimonies.