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How Being Undiagnosed Can Affect Your Emotional Quality of Life

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We live in a world where answers are treated like the most important thing. Especially in the medical system.

I’ve thought about this, and it’s easy to initially think that undiagnosed patients desperately want an answer for only one main reason. To be able to treat it.

I think it goes so far beyond that. Why? Because our society treats people better when they have an answer.

If you think about it, many diseases, disorders and illnesses don’t have a cure. They don’t have a fail-proof treatment plan. They can only treat the symptoms, as they come. Constantly putting out fires, and starting new fires in the process. Putting medicinal bandaids on pain, helping inflammation, stopping overactive immune systems, etc. And this can all also be done for someone who doesn’t have a name to put to their symptoms.

I know this because I have known, diagnosed health issues, and I have “medical mystery” health issues. My mystery ones are the ones that require the harshest medications. Immunosuppressants.

Yet, it is still better to have an answer. A reason. A diagnosis to tell to doctors, coworkers, friends and loved ones. Even though the exact same treatments can be used on both, both are never cured and quality of life in terms of “getting better” are identical.

But, here comes the essential part of this equation. A patient who has a specific diagnosis tends to be treated better. With respect, dignity, caring, patience and understanding. Not only by medical professionals, but also by their peers and loved ones. They often have a better emotional quality of life.

There’s this idea that if a test hasn’t been able to pinpoint it, you aren’t as sick as the person who has a known ailment…even if that person’s ailment is far less severe. People die from undiagnosed health problems all the time. The amount of people who don’t have answers, despite trying everything, is staggering.

Patients are made to feel like they are odd. That they are the problem, if an answer can’t be found. That it is rare to remain undiagnosed. That they are doing something wrong. It is not rare. At all. There are so many of us out there. So many of us who worry every time we go to a doctor or need to go to the emergency room. Not only worried about our health. Worried about how we will be treated. Worried about being openly disregarded and verbally attacked.

There’s the constant, underlying likelihood that you could be treated as though you are “faking it” or that it might all be psychological. What’s awful about that is if they suspect that, they aren’t sympathetic or wanting to help a person deal with any psychological cause. They want nothing to do with you. They are rude and dismissive. It causes the patient, the doctor, the peers, the family members to constantly have to toss this hot potato of fear and judgment around. Is it real? Does the doctor believe me? Will this doctor help me? How will my family treat me, now that I have another negative result?

It can put a patient into a tailspin of wasting their badly needed energy on trying to prove their illness, their integrity, their pain, during a time when their body needs that energy to simply live. It can cause behaviors that seem desperate, which leads to the patient appearing unstable and anxious; causing the disbelief and the need to “prove” to become an exhausting, never-ending cycle.

Answers are always good. Knowledge is power. But, it’s inevitable that doctors won’t be able to solve every health issue. We don’t know everything. Imagine, though, how much easier undiagnosed illness would be, for the patient and all others involved, if the focus became respect. Believing. Treating. Caring. Working with the body and the mind, in a way where a stigma is not created if the patient works on their mental health as well as their physical health.

Right now, it can be dangerous to admit you are struggling with anxiety and depression if you also have an undiagnosed physical illness. You risk being labeled as only experiencing mental effects, and receiving no care for your physical problems and subpar care for the anxiety or depression. Then, not only are you receiving no care, you are being horribly judged and disrespected.

Working as a team to improve quality of life, in all aspects, despite the unknown, would actually make it easier to pinpoint the few, rare “fakers,” or the people who have legitimate pain and illness caused by psychological factors, and get them the psychological help they need and deserve. Let’s face it, someone isn’t going to fake illness and pain unless they have additional issues going on. It’s not fun, being mocked and abused by the medical system. Those issues deserve respect and treatment as well. They are real medical problems, just as a physical disease is. Calling them fakers feeds into the whole problem our society faces right now. They impact the person’s life and they need and deserve help and understanding.

I hope we will someday arrive at a place where not having a diagnosis is acceptable, and doesn’t impede treatment options and being treated like a worthy human being. Not having a diagnosis should not be an open invitation for condescension and abuse.

One way we can start to change this is to change how we view others who don’t have answers. The next time we go to judge someone else and their pain, let’s stop. Let’s replace judgment with caring and empathy. Let’s start a new conversation.

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Originally published: July 20, 2017
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