The Power of Believing Yourself When You Have an Illness

When I reflect on my 23 years of life – a life of working with healthcare staff to find a reason for the feelings of exhaustion and pain and other symptoms that cloud my earliest memories – a single word stands out strongly.

Belief.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I didn’t always feel believed by my teachers, by some doctors and nurses or even by myself at some points. I was ill, extremely ill, the weeks I spent in the hospital. I had disturbed levels in my blood and a mish-mash of long words that flew over my head as a 7-year-old. Yet we couldn’t put a finger on the cause, the reason why different systems in my body started malfunctioning. I felt disbelieved. My struggle was plain to see, but no label or comprehensive diagnosis could be “magicked” up, so it felt like there was often an unspoken question mark — a sense of disbelief at the speed and spread of so many different problems. From my digestive and hematological problems as a baby to severe bladder and kidney issues in my first years of school to respiratory difficulties, allergic reactions, feeling generally weak and tired all the time… Something was running riot through my body and refused to leave a calling card.

Sometimes I believed I could simply push through this mystery blockade by burning myself out attempting a solution, only to land back in bed again. Some symptoms I simply came to believe were “normal” for my clearly “unusual” body. Nobody else around me seemed to have them, but we didn’t really know why they were there, so I put up with them. As I got older I often fought between doubting myself and believing what I was experiencing. I felt a sense of anger and hopelessness at the prospect of this cycle continuing into the future.

In the past couple of years, thanks to the blessing that is advancements in medical research, I now have a clearer understanding of what I have and a better framework to comprehend a life of battling my illness in both the hospital and at home. Ehlers-Danlos syndrome (and the many linked syndromes and illnesses explaining my poor and widespread health) is still a long way from being recognized for how truly debilitating and dangerous it can be. But, knowing my challenger’s name means I can tackle it head on.

Ever since being diagnosed, some people have tried to push me back into disbelieving the truth about my health. Ill-informed professionals, a rare minority of others living with chronic illnesses who made judgments and spread unkindness and lies, family members who struggle to grasp the concept of an illness that is chronic and permanent… I’ve learned there will always be challenges to my self-belief. But I’ve also learned that with the unfailing love and support of my husband, close family, incredible friends and a wonderful team of professionals helping me to live as good a life as possible, I can finally say to the mirror, “I believe you,” and mean it. Ignorance may sting, but only briefly, because, like the delicate canvas of a garden in spring, I am learning to always keep nurturing and nourishing that belief in myself so it is ready to blossom when I need it the most in my journey. Self-belief is so powerful.

To anyone reading this who is currently undiagnosed, living with a condition that has no name or struggles with individuals and professionals disbelieving their journey: I believe you! I believe your truth and I believe with my whole heart that one day you will be able to give your body the belief, respect and kindness you fully deserve.

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