10 Questions to Ask Yourself While Waiting for a Diagnosis


Waiting for a diagnosis is like taking a stroll in the Twilight Zone: Everything seems normal, but something has deeply gone wrong. And while there are a lot of online resources about what to do when you’ve been newly diagnosed, there’s less about what to do while you’re still waiting for a diagnosis. So I’d like to offer my advice to others on how to deal with the wait.

1. Should I Google or not Google?

Google is a great resource to tell you whether or not you should go to the doctor. However, when I Googled illnesses that my doctor was testing me for, I was in for a sleepless night after what had already been a long day. That’s not to say that you shouldn’t Google symptoms or illnesses — it’s good to be proactive and educated. But if you’re feeling a bit anxious or if you want to go to sleep any time soon, maybe hold off on Google.

2. Who do I tell?

I knew I’d have to tell my parents. I didn’t want to, but that was necessary. I’ve also told some of my closer friends in college and will likely have to inform some professors as well.

We’ll all have different reasons for telling different people. And while I prefer to keep the matter private, others may prefer to tell everyone. There are advantages to both. One keeps your life more normal, but the other has a more obvious support system. So think about what would help you the most. Don’t forget to take care of the people you tell, too. Let them vent their frustrations, suggest someone else they could talk to or steer the conversation to lighter topics. Most of all, make sure you trust the person.

3. Where’s the best place to receive my care?

Hopefully, this won’t be a question you need to ask, but I did when local doctors were unable to diagnose me. You want to go somewhere that offers great care and, if possible, is close to home. I chose a hospital that was between my college home and my parents’ home, which I can get to relatively easily.

4. Is there a limit to how far I’ll allow treatment to go?

It can be a bit strange asking what you’ll give up to start feeling better. However, I’ve had to give up classes that I was so excited about in favor of safer classes. I might have to give up school, which I love. I was super anxious about this until I asked myself, “How far am I willing to go?” When I answered that question, a lot of that anxiety melted away.

5. How do I accommodate symptoms?

This can be a complex question. For my college, I have to go through a lot of paperwork to get the accommodations I’ll likely need. But this one can be somewhat fun since it requires some experimentation. For example, it’s hard for me to walk around right now, but I’ve discovered paths in my house that allow me move around in a rolling chair! So, yes, there will be some unpleasant things to deal with, but this is also an opportunity to have a different kind of fun.

6. How do I distract myself at night?

At night, you’re alone with your thoughts, and that’s when my mind starts to turn dark. It tells me that I’m a burden or frightens me with unpronounceable medical words. I doubt I’m alone in this. I’ve heard books, TV and puzzles help, but those aren’t available when your roommate is trying to rest before a big test. Personally, I have a music app that plays hymns. I plug in my earphones and listen until I calm down and sleep. Phone games are also good, and I play Candy Crush a lot.

7. How much should I tell the people who know?

This question will continue to pop up as you receive more news (or deal with lack or news). I’d say that if you need to say something, say it to someone you trust. You’ll have to play this by ear, but don’t be afraid to listen to your heart.

8. How do I politely deal with medical advice from well-meaning people who aren’t doctors?

Realize they want to help you, which means that they care about you. Try to redirect that desire into something more constructive by telling them what you need from them. That could be a hug, someone to vent to, someone to pick up your kids — whatever. They just want to be there for you. You’re not the only one going through this journey.

9. How do I cope?

Find something that you can do that doesn’t interfere with your illness. Right now, I spend a lot of time drawing and playing piano. Some people like to journal or blog. If you can, go out and help someone else at the local Salvation Army, food bank or animal shelter. You may feel a lot better after helping someone else out. Don’t forget to reach out to friends too.

10. What should I do when I realize I’m being an angst monster?

Sometimes emotions get the best of us. It’s easy to get frustrated and angry from all the confusion about our health. So, if you do get angry, stop and think about why. Even if that anger is justified, the action of stopping will help transform you from a fiery ball of rage into the person you truly are. I’ve found that if I’m angry because of my illness, it helps to make jokes with a friend. Try to find the humor to ease the intensity!

We want to hear your story. Become a Mighty contributor here.

Lead photo source: Thinkstock Images


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