Controlling the Disease Narrative

Have you ever been anxious about telling someone you have a condition or disease? You finally get to the point of telling them and two seemingly contradictory events occur — relief and a feeling you are no longer in control of your condition.

Telling someone that you have something that impacts your everyday experience with the world can be one of the hardest things to do. For me, it is never easy to tell someone I have Type 1 Diabetes. In a way, you need to tell them in the event that anything were to happen to you, but telling them often leads to the person believing they have a right to now tell you how to manage your condition. Things like, “Should you really be eating that piece of cake?” Often the response I want to give is, “Yes, I should be eating this piece of cake. Should you?” But then you have to remember that by telling someone about your condition you are inviting them into a space they do not know anything about. Of course they are going to naturally ask you if you can or cannot do something. The best thing to do is these situations is to educate them.

You are the expert of your condition and you shouldn’t be afraid to educate people about it. The more they know, the more prepared they can be in the event they do need to help you with it. You can have control over your condition by reminding people of what you can do. Yes, I can have that piece of cake. Do I need to count the carbs, take insulin, wait 15 minutes to eat it, and then wonder if I did too much or little insulin for the next several hours? I do. I also have every right to live a life just as enjoyable as yours.

Telling someone about your condition doesn’t have to mean losing control over how you manage it. Sometimes a simple reminder that you are the expert and live with this everyday is all you need when you feel like someone is trying to tell you how to live your life. The only real difference between you and them is knowing you have the power to tell them more about the condition.