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The Plight of the Ill and Undiagnosed

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When someone is chronically ill they face many challenges. We cycle through unexpected relapses, a loss of normal life, and treatments with lasting side effects. All of these can become worse when doctors fail to find a diagnosis somewhat quickly. You see, I’ve found that doctors don’t typically like it when they can’t find a diagnosis and send you on a treatment plan. In complicated patients, such as myself, this can become a problem.

Most of the time, when patients’ symptoms are more difficult to diagnose they are shuffled around. I’ve been referred to a specialist by another because I needed someone with more experience in hard-to-find illnesses. I was then referred to two other specialists to get specific testing that is done by a specific specialty. It is a perfect example of the snowball effect. It just keeps going. Sometimes you don’t even realize it, but you’ve been passed around like a great Christmas gift in a white elephant game. It is very exhausting for the patient and their caregiver. Our situation is different than those who have a clear-cut diagnosis. In diagnosed cases, doctors usually have an established protocol in place that they follow. While every patient is different, they still have a basic outline of their plans and expectations to give to the patient.

In my experience, undiagnosed members of the chronically ill yearn for an answer no matter what it is. We’re constantly told “at least it’s not cancer” after we disclose that our blood work is clear for that particular group of illnesses. I can understand where people are coming from with this statement. In their minds, cancer is the worst possible outcome. In my mind, remaining undiagnosed is also a terrible outcome. I could have some disease that causes paralysis or death when it is untreated, but I can’t be treated because the doctors can’t find it. Now, I don’t believe this is the case with me although it might be for other members of the chronically ill community.

I would go through any test if it would yield a diagnosis. Last night I was in the emergency room and the doctor asked me if I had undergone a lumbar puncture. I replied without thinking and said, “No, I wish.” The doctor turned to me with a quizzical look. I realized this must sound strange to someone without undiagnosed chronic illness. Who would want to have a painful diagnostic procedure? Me. I’ve read several clinical studies on the topic of diagnostic procedures as well as on my unusual combination of symptoms. A lumbar puncture just might be the test that provides a solution to the puzzle that is my health. I would give anything to find that solution.

However, my desire for this test could be what prevents me from having it. The doctors I have encountered do not take to kindly to suggestions from patients. This is overwhelmingly frustrating because we know our bodies. We know when something isn’t right. We, sometimes, have an intuition about what needs to be done for our health be it a procedure, test, or treatment. I understand that doctors cannot go chasing every whim a patient may insist upon. They do have very busy lives and a chain of command to follow. Yet at the same time, who better to suggest a test than the very person enduring the illness?

This leads me into my last point. Undiagnosed patients often feel very isolated. We can’t join that Facebook support group because we don’t have an official diagnosis. We feel a bit strange messaging someone about their experiences with a particular illness because we can’t say, with a doctor’s support, that we too have it. If a doctor would take the time to really listen to us, they would understand that we are not chasing down every lead we come across, but that we are intelligent people who can feel the nuances in our bodies.

It can be so very difficult to explain exactly what the pain feels like or how severe it is. These are very subjective characteristics of each individual illness. I may have the symptoms of multiple sclerosis or Crohn’s disease or any other disease the doctors have mentioned, but I can’t explain it to them in the way they associate symptoms with the disease so they won’t consider testing for it. Even when another doctor has stated the likelihood of a specific illness to me, because they did not put it in my chart it is not taken into account. It feels like medical professionals just don’t believe us.

We don’t want to be sick. We don’t want the illness to take over our lives and force changes but sometimes we accept it. We just want to know what is happening with our bodies and we expect doctors to be able to figure it out. Now I know it might not ever be discovered. I may always be treated for my symptoms and not the underlying cause. But if I have any say in the matter, we will pursue every reasonable option before we accept that fate. I will see to it.

Love and spoons,

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Originally published: October 30, 2016
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