The Mighty Logo

The Anxiety That Infiltrates Your Mind When You're Undiagnosed

When you get sick, you go in to see your doctor when things don’t improve after a specific amount of time. Everyone is different — some people will wait a couple days while others wait a week (or longer) before going in to see their doctor. And that’s fine, no matter where you fall on the timeline.

When you go into the doctor to explain what’s going on and they cannot give you a direct answer on why it’s happening, that’s when anxiety slowly starts to infiltrate your mind.

My endometriosis journey started with what my first doctor suspected as a “newly formed allergy from work, which caused a vasovagal syncope reaction.” After a few days away from work, where the suspected allergy trigger was, it was clear that wasn’t my problem because not only was I still having ongoing symptoms, they were progressing.

Naturally, I went back to my doctor, and reported how my symptoms were getting worse and that I didn’t think it was an environment related issue, but something was going wrong inside my body. That’s when the horrible process started – countless tests, labs and image scans – and needing to wait so long for each one before you could progress to another.

This is where anxiety comes into play and sets its roots.

Imagine your body acting completely differently, out of the blue on one random day, and your doctor cannot find out what’s wrong with you, despite the symptoms you present and how long they have been going on. You rely on your doctor to have answers and if they don’t, they will guide you to them, but sometimes even doctors don’t know where to turn and they don’t have time to comfort you as your frustration and fear builds over time.

The longer I went without answers, the longer I couldn’t start any treatments or try to create a plan to manage my pain/symptoms because we didn’t know the actual cause.

My body and mind started to panic and included some of these thoughts, on the hour at times:

  • What if I’m dying from something?
  • What if I have something rare that takes too long to find and serious damage occurs that cannot be reversed?
  • What if it’s not just a bug, virus or parasite – what if I have a disease or cancer?
  • What if all of this really is in my head?

The thoughts you have while undiagnosed are torture and a living hell some days. My anxiety makes me race with ridiculous worry, heart palpitations, chest pain, breathing differently, sweating, a twisted stomach and feeling lightheaded.

All of this is your body reacting to the unknown – no answers creates a lot of worries – but it’s natural, and it’s completely normal! Our brains are very logical. It wants to understand why the body is acting out, it wants to rationalize the fear, worries, pain and symptoms, but it cannot do any of that without answers.

And everyone around you tries to tell you:

  • If nothing is being found, that’s good news
  • If nothing is being found, maybe it’s all in your head – how are your stress levels?
  • If nothing is being found, you need to stay positive all day, every day, because that can make a big difference to your overall health
  • If nothing is being found, maybe it’s just anxiety? Are you depressed too?
  • If nothing is being found, they will tell you to try “X” diet because it helped cure so-and-so, and they had similar symptoms as you

Let’s be real for a moment: If nothing is being found, you need to find a new doctor or keep pushing for more tests or specialists until something is found. Period.

We all know our individual bodies. We have lived in them our whole lives, when we say something is wrong, doctors need to believe us, regardless of what tests say. Tests miss stuff all the time and we still don’t have tests developed to positively prove some diseases are present yet.

And if you’re reading this and find yourself in this situation, please know I do not think you’re crazy and I believe you. I know it’s not all in your head and I have been where you are right now. It sucks, and I’m sorry you must go through it, but I know you will fight to be heard and demand answers, even if that means it will take months or years.

Do not ever give up because you know your body – better than any doctor or test.

Getty photo by Grandfailure

Conversations 5