The Lasting Mental Toll of Being Undiagnosed

Facing a undiagnosed mystery illness is, by far, one of the scariest things a person can face. Like any chronic illness, the symptoms knock you about, physically drain you and restrict all aspects of your “normal” life, but it’s the mental impact of an undiagnosed illness that I want to address.

The time spent undiagnosed feels like an endless mental game. It starts with doctors appointments, tests, anxiously waiting for results and utter confusion when the tests don’t show anything. You start to question whether anything really is wrong, not because you’re not sick, but because the medical community cannot understand or provide you with answers. You question every aspect of your body. Monitor it for changes and wait anxiously for another test, appointment, medication or just pure chance that the nature of your illness will change.

This was my life for two years until I was finally diagnosed with gastroparesis and severe post-infectious irritable bowel syndrome (IBS), and put on an abnormal long-term treatment. I endured countless surgeries, specialist referrals, medication plans, diets and, most importantly, negative or inconclusive tests. One year since my diagnosis, and physically I’m almost back to my “normal” self… but I don’t feel it at all. Why? Because I can’t shake the emotions, insecurities and despair of being an undiagnosed patient.

There is minimal support in place for undiagnosed patients. There’s no local support group, information booklet or specialist practitioner. Friends and family don’t have the knowledge to understand what is happening and the medical community either ignore the struggle or try to treat you as a mental health patient. Mental health labels don’t effectively address the complexity of an undiagnosed patient and may run the risk of the physical illness being overlooked.

Being an undiagnosed patient took a huge toll on my mental health. I’m now on the long, uphill battle to overcome the anxiety and depression I’ve had long after my physical symptoms began to subside.

My physical scars from numerous surgeries have healed, but it’s the mental scars that have got a long way to go. I still feel like that alone, confused and distraught girl whose body betrayed her without any reason. I can only hope the medical community starts to recognize the need for greater recognition and support of undiagnosed patients. It can be a long journey, and a journey no one should face alone.