The Scenario That Helps Me Explain the Frustration of Being Undiagnosed

As someone with an undiagnosed chronic illness, I know firsthand how difficult it can be to explain my situation to others who aren’t going through the same thing. So, to aid in this, I came up with a scenario.

Picture this:

You have a job. For the past year and a half, you have been working this job every single day. This job does not pay well, and there are no benefits. This job steals time from your family, and uses up every ounce of energy you have. But, you continue at this job, because you have no choice. You’ve been looking for another job for a long time. You spend hours on a resume, making sure to document everything and type it up in a neat format. Finally, you get the call that you have a start date at a brand new job. This new job will have better hours, better benefits, and allow you more time and energy to spend on your family. The new start date is two months away, but you tell yourself you can make it through until then. You count down the days, while continuing to suffer on a daily basis at your current job.

You dream of the possibilities: Weekends back with your children. Time and energy to cook dinner. Time to get coffee with a friend. The possibilities are endless.

The first day of the new job finally comes. You get your oldest child on the bus and drop your youngest off at preschool. You arrive to the new job early, resume in hand. You are taken to a room by the receptionist and anxiously await meeting your new boss. Finally, the new boss walks in. You start telling them all about your past experience, but they don’t seem to be paying much attention. They are more interested in the computer screen. They ask you a lot of questions, which you find odd – it’s almost as if they’ve never even read your resume, which doesn’t make sense because they’ve had it for months.

Not much time later, they conclude they don’t think this job is a good fit. They give you a recommendation for another job. You choke back tears. They shake your hand and leave the room. The tears force themselves out and you choke back a sob. The disappointment is crushing. The hopes and dreams you had for this new job crash to the ground and shatter around you.

You leave the new job more confused and hopeless than ever. You call up the recommendation they gave you, and get a new start date. Another two months away. You wonder how you will continue to go on, how you will make it another two months of misery. You think about giving up, but you can’t. You have kids who need their mom. Everyone tells you, “Just hold out until the next start date. You can do it. This new job will be great.”

Then the same thing happens. Again.

Repeat this scenario multiple times.

This is what it’s like as someone who is chronically ill and undiagnosed. The miserable job you work is your illness, your resume is your medical record, and each new appointment is an opportunity to finally meet someone who can help you. Except you haven’t met that person yet, and each new appointment only brings crushing disappointment and uncertainty. You wait months for an appointment, while continuing to struggle, only to be told they can’t help you.

It’s the most exhausting and unrelenting battle I have ever fought, and there’s no end in sight.

But I keep going, because what choice do I have? Someday, I am going to meet someone who can help me, someone who can figure out this puzzle and someone who can give my kids back their mom.

Even though it’s difficult and at times unbearable, keep fighting. Keep supporting your loved ones who are fighting for a diagnosis. Attend appointments, help them keep track of symptoms, test results, etc.

Keep seeing doctors until you find one who listens to you, because they do exist.