Relief, Anger and Wasted Years

Most people expect a correct diagnosis to feel like relief. After years of the wrong one, the reaction is usually more complicated than that.

The relief is real. An explanation that finally fits, a treatment that works better, sometimes freedom from injections — in one UK study, eight of nine people with GCK-MODY stopped diabetes treatment altogether, seven of them having previously been on insulin.

The anger is also real, and it is not unreasonable. Years of injections that were not needed. A decade of dietary restriction for a set point food could not change. Being told repeatedly that your numbers reflected your discipline when they reflected your genes. Appointments where you were treated as non-compliant.

Some people also feel a strange loss of identity. If you have been a person with Type 1 diabetes since you were fourteen, being told at thirty that you are not is disorienting, even when the news is good.

And there can be guilt about relatives — that you might have passed this on, or that a parent went undiagnosed.

All of that is a normal response to a genuinely unusual situation, and none of it means you are ungrateful for the correct diagnosis.

It is worth saying out loud rather than swallowing. Diabetes distress is a recognised part of diabetes care and screening for it is recommended — and the version that follows a misdiagnosis has its own particular weight.