Explaining a Diagnosis Nobody Knows

Living with monogenic diabetes involves a lot of explaining, because almost nobody you meet will have heard of it — and that includes some medical staff.

A short version that works: "I have a rare form of diabetes caused by a single gene. It is not Type 1 or Type 2. It runs in my family and it is treated differently."

For the common questions:

• "So is it the serious kind?" — It is its own kind. Some forms need no treatment at all; others are treated with tablets.
• "Did you get it from your diet?" — No. It is inherited, and was determined before birth.
• "Will you grow out of it?" — No, but in some forms it stays mild and stable throughout life.
• "Why aren't you on insulin?" — Because my specific gene responds to a tablet, or needs no medicine.
• "You don't look diabetic." — This form typically occurs in people of normal weight.

With doctors the situation is different and needs a different approach. Carry your genetic report, or a photograph of it, and lead with the gene name rather than the term monogenic diabetes. A clinician who has never managed a case will still recognise a laboratory report naming a pathogenic variant.

With employers and insurers, keep it factual and practical rather than educational.

You will get tired of explaining. Having two or three sentences ready makes it much less draining.