The Bittersweet Moment of Finally Receiving a Diagnosis


The doctors finally have it. They walk into the room and finally drop the truth bomb on you. However, they might not see what a bittersweet moment this is for you.

At the first mention of a diagnosis, you feel overjoyed. The doctors have finally come up with a word or phrase that sums up your life. Finally your symptoms seem rational and a doctor is telling you it’s not all in your head. For many of those with rare invisible illnesses, it takes years to get to this point, and some never get a diagnosis at all, so you feel fortunate to finally have answers.

The doctor then starts to lay out treatment plans. For me, this included seeing a geneticist to test for which specific type of the illness I have and then seeing other doctors as issues come up. At this point you are practically overjoyed as the doctor is not only validating your symptoms, but brainstorming solutions for them.

Then, reality sets in. You realize this illness will probably be with you your whole life. This invisible illness will loom in the background, messing with your future while others believe you are fine. Though everyone’s future is uncertain, you see that yours is more unpredictable and likely to change than other people’s. As my friend Brooke put it the other night, “You don’t know if you will wake up, you don’t know if you’ll be able to walk and you don’t know what each morning holds.” These are the thoughts that loom over you once you realize you are never getting better.

I wish everyone could see this part of the diagnosis. Doctors see the patient breathing a sigh of relief as they are validated, but they don’t see the reality setting in. Even though I never let down my “I’m OK” act in front of my friends, I will not actually be OK after diagnosis. I will want to talk about my uncertainties and concerns, but I won’t know how. I will be worried that I talk too much about my illness or seem pitiful. Everyone should know that it’s OK to ask me how I’m doing and insist on a real answer. My automatic answer is “I’m OK,” even on days I’m about to scream from pain, but I’m still dying for you to insist on an honest answer.

While we may seem fragile, those of us with chronic illnesses are stronger than you think. So ask us the real questions, and we will give you a real answer.


Find this story helpful? Share it with someone you care about.


Related to Chronic Illness

woman with a feeding tube

A Feeding Tube Patient’s Reaction to 'Feeding Tube Diets'

For years I have seen articles promoting “feeding tube diets,” and I usually keep my disgust private, but today I am fresh out of patience. As a patient who has relied on a feeding tube to live, there are a few things I want fad dieters to know. 1. There is nothing glamorous about a feeding tube. Your face may break [...]
woman holding her stomach and a friend helping her

How to Help a Friend in a Flare Up

Several amazing friends and family members of chronic illness patients have sent me emails lately asking what are some of the ways they can best help their friend while they are experiencing a flare. First let me say this is touching to see so many people understand when we are in a flare help is often needed and greatly [...]
busy hospital corridor with medical staff

How I Remind Myself of the Power I Have When I Feel Powerless as a Patient

As a person living with chronic illness, I’ve had my share of good and not so good experiences with healthcare providers. While I am ever so thankful for the good, I’ve come to appreciate the not so good, since they remind me some doctors and nurses aren’t always the gods and angels I want them to be. Just [...]
Two female friends talking at a coffee shop

How to Lessen the Distance Between You and Your Healthy Friends

“Empathy isn’t just listening, it’s asking the questions whose answers need to be listened to. Empathy requires inquiry as much as imagination. Empathy requires knowing you know nothing.” — Leslie Jamison “Empathy Exams” I’m chronically ill. I have healthy friends. This is a problem sometimes. I’ve struggled to describe my situation to them in a way that wouldn’t [...]