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.