Diagnosis is a Privilege: Your Mental Illness is Still Valid Without a Diagnosis

A while back, I remember telling a friend of mine that I may have OCD. I had compulsions and rituals that had taken over my life and intrusive thoughts that I never seemed to be able to escape from. I’ll never forget what my friend told me once I shared my struggles: “Have you received a diagnosis? Stop self-diagnosing yourself.” Much younger and naive, I told my friend that she was right. I had no right to claim that I had OCD until I had received a formal diagnosis, period.

However, as I learned more about mental health, I came to realize that a diagnosis isn’t something that can easily be obtained by everyone and you are still allowed to talk about your struggles with mental illness without a diagnosis. Your struggles and experiences should never be invalidated just because you didn’t receive a diagnosis.

A formal diagnosis is sometimes referred to as “an economic privilege” or “a form of economic discrimination”. These terms may seem harsh for something as simple as a diagnosis; but, a diagnosis isn’t really that simple at all.

As each year passes by in the United States, medical debt rises exponentially. For most in the United States, healthcare is usually not affordable and medical bills can often take years to pay off. Because so many people avoid racking up medical expenses, getting a diagnosis may not be a priority for some. It can cost quite a lot to see a medical professional and receive a formal diagnosis, and this expense may not fit in a budget, especially a low-income budget. “Diagnosis Privilege Can Be a Form of Discrimination”, written by Bailey Vincent and published by Cystic Fibrosis News Today perfectly describes why a diagnosis may be unattainable for some. Bailey writes of a “diagnostic limbo”:

“Just because someone cannot dedicate their lives to being identified beneath a singular umbrella does not make the rain any less wet.”

Bailey also writes about those who may not have gas or proper transportation to “shuttle back and forth to doctor after doctor looking for answers”. Transportation is something not everyone has access to. And what about those who are able to take public transportation but the bus schedule doesn’t match the appointment time? Chances are, that same person probably won’t be able to afford the medical bill for their diagnosis either.

All of these factors prove that a diagnosis isn’t as simple or easy to obtain as it seems and we shouldn’t invalidate someone just because they may not have the privilege of receiving one.

So, what happens if someone doesn’t have a diagnosis. Is it necessary to have a diagnosis to be able to say you have a certain mental illness?

Well, here’s where the lines get a little bit blurry.

Self-diagnosing can, obviously, be harmful. People claiming they have OCD because they like their pencils to be sharpened a certain way can stigmatize and blur the true definition of OCD. OCD can be characterized by strong compulsions and urges that go beyond wanting things a certain way; it makes the person feel things need to be a certain way or that they just have to engage in a compulsive behavior or something bad may happen. Not engaging in these behaviors can cause extreme mental distress and intrusive thoughts threatening danger, death, or other extreme outcomes if the compulsion is not done. OCD is a very complex and upsetting illness that takes extreme tolls on those who experience it. With the culture of casual self-diagnosing, the true extent of a mental illness like OCD for example can be lost.

Oftentimes, when I hear someone discussing OCD, I hear them say “isn’t that when you keep washing your hands” or something along those uninformed lines. It isn’t until they truly learn what OCD is that they realize how wrong they were.

So it seems that self-diagnosing isn’t a good idea unless you are qualified to do so and a diagnosis might not be something you can attain. What now?

Recognize that if you feel you have a mental illness, you may or not actually have one. But that “mental label” doesn’t erase or amplify everything you experience and feel. Just because one does not have a diagnosis doesn’t mean that what they have experienced doesn’t matter or never happened.

For those with a diagnosis, it is important to recognize your privilege and understand that those without a diagnosis need your support too. Instead of discussing whether or not we have a diagnosis, we need to be checking on our friends, listening to them when they express themselves, and not being afraid to reach out to others for help when we need it.

You do not need a diagnosis to tell you what you are experiencing is real. There are always resources to help you with your mental health and you are valid, even without a diagnosis.