Many health problems do not give up a clear diagnosis. How to live with this?

It’s common.

It’s common not to have a clear diagnosis. Many times a physician does not know the cause or exact nature of the problem, but does know that the body will heal most problems with good general care, sometimes called “non-specific treatment”. “Wastebasket” diagnostic categories exist for this reason. These are categories for conditions that don’t fit the general classification structure. Nature is more complex than our textbooks.

Why we want a diagnosis

Ideally, a diagnosis guides treatment. We know what this problem is, we know how to fix it. With a diagnosis, therefore, we feel more confident that we will be cured and that our normal life will soon resume.

A diagnosis may also bring with it a predicted course, or prognosis. From this, we can plan because we know what to expect. We will not be taken by surprise by changes in the condition. We may know how to make life more comfortable while we are mending, since we will know how long it will take to get better. We can prepare.

A diagnosis helps us to make sense of our symptoms. It begins to explain why some different symptoms go together, for example. This makes our problem less mysterious, whether or not there is a cure or treatment. We find patterns and explanations reassuring. We are prone to fear what we don’t understand, and a diagnosis may be a way reduce the fear of the unknown.

Diagnosis makes us feel safer, cared for. Someone understands this. It is known, and real. Lack of diagnosis on the other hand makes us feel vulnerable. The medical system is shown to be imperfect. It does not know something. This puts us in a less secure position than we thought. If the medical system is imperfect, I might not get help when I need it.

Diagnosis makes us feel not alone. There are others with this condition too, or else it would not have a name. This makes us feel less unique, isolated, and this is reassuring. Who would want to be the only person on the planet with a bizarre and unknown condition?

Diagnosis has financial implications. In order to get a disability claim you need to have a certain kind of diagnosis. Because human beings are not 100% honest all the time, there are checks in the compensation / disability system. One of these it not to hand out money to people who say they are sick without evidence of this. Second, some conditions are only temporary. One does not want to plan long term support for someone who will soon be well. Diagnoses help make this distinction between temporary and chronic conditions.

There is a social stigma of having an invisible condition or one that is not diagnosed. We want a diagnostic label to explain what we have to others. Especially if the condition is invisible to others, we can defend ourselves to those who are suspicious, skeptical, or critical. We can also justify our behaviour, explaining that this not not normal everyday situation. “Yes”, they say, “I get a sore back too sometimes. Don’t be a whiner”. A diagnosis of a herniated disk tells the critic that we are justified in not lifting that heavy load today.

Lack of diagnosis makes people wonder sometimes “Am I imagining this? Is it all in my head? Is this a sign of emotional or mental weakness?” All of these are based on shame and judgement, and also misunderstand how mind and body interface. Interestingly, we are often more prepared to be physically ill than to have some kind of shameful mental condition causing symptoms, especially ones that are invisible to others. That would be a moral weakness indeed. A diagnosis is reassuring. There is nothing wrong with me as a person. I have an illness.

When there is no physical diagnosis, the phrase “All in your head” sometimes is dusted off and thrown at the patient. This is not a diagnosis, nor is it an explanation that makes any psychological or physiological sense. Some people may say this assuming that if there is no gross physical pathology, the condition is therefore not physical but psychological. There are several problems with this. It is illogical, since LACK of evidence is not evidence OF anything. It ignores the fact that mind and body are not separate systems but are integrated. It is unhelpful, since it does not guide treatment in any way or lead to recomendations. It is vague, again not guiding treatment. It is as if a psychologist would meet someone and say “you have a physiological problem”. So what? As an analysis it does not go very far.

Expectations of the medical community have been raised to extremes with publicity of dramatic surgeries, advances in knowledge, high-tech medical procedures, and new drugs always being announced. We have high expecations and are disappointed with lack of diagnosis, and see it as a failure. Patients are not alone in this. Lack of diagnosis makes medical people very uncomfortable. Their training tells them to diagnose in order to do treatment.

Why diagnosis sometimes does not matter

Some diagnoses are really just descriptions, rather than explanations. A case in point is being diagnosed with a “syndrome” as opposed to a disease. Common conditions like fibromyalgia, chronic regional pain syndrome, chronic fatigue, etc are really just describing what the person experiences. Even where a cause is implied, as in ‘repetitive strain injury’, it’s just describing how it came about, without being able to say what the prognosis is. The same goes in a different way with something like ‘tendinitis’, which means literally, inflammation of the tendon. Having such a diagnosis does not guarantee any particular treatment will work, or how long it will last, or how disabling it will be.

Another reminder about the limits of diagnoses is that we can have one, and still not have treatment for the condition. We sometimes assume that what we can identify we can treat, and this is not always the case. If it were, there would be no chronic diseases, and no one would die from illnesses. Then there is the opposite case when we know what to do to help without a diagnosis. In the case of some pain problems, having or not having a specific explanation may not even change the treatment. It is evident what the person needs to do, or have done, based on the symptoms and pattern of behaviour.

How many people do we need to go and see before deciding to let the issue go? This is an individual choice. There are some dangers involved in focusing for too long on getting a diagnosis. If you have symptoms that disable you in some way, but no one is labelling them, we may feel life is on hold – we don’t know what the progress of the symptoms will be. Will I feel worse or better next year? Waiting for the diagnosis can make us stuck as well as sick. Meanwhile there may be some health-giving things we could be doing. Seeking a diagnosis can take a lot of energy, and can distract from making pressing adjustments.

If there has been reasonable medical investigation without a clear diagnosis, we can now rest assured that there is likely nothing life threatening. Some people fear that because there is no diagnosis, that this leaves open the possibility that some dreadful condition has been missed. However, physicians are trained to look first for the really serious things, and rule them out. No diagnosis likely means that the condition is not life threatening, as these usually can be diagnosed. Knowing this, we can let go of some of the fear, even without a diagnosis.

How to live with lack of diagnosis?

As I noted above, there are many reasons why having a diagnosis is important to us, and a few reasons why it can become too important. Sometimes, despite everyone’s best efforts, though, there just is not a clear diagnosis. What then? Here are a few suggestions.

Acknowledge that the medical community does not at present have a solution for you, and seek solutions in some other form. This may involve life style changes, getting support from friends or family, focusing more on adapting to the condition than on curing it, working with healers outside the orthodox medical system, or just deciding to get on with life as it is. And don’t think that this is somehow an unusual situation.

Be clear within yourself that your symptoms are real, even if they don’t have a name. Don’t be bullied by others who in well meaning words or in judgment invalidate you. Study your symptoms, see what affects them for good or ill. As you learn about them from experience, you will learn better how to manage them and how to manage your life.

Figure out what it is that you are are most afraid of – what are the fears that a diagnosis would put to rest? See if these fears can be allayed in other ways. Maybe you already have some of the information you need to answer your questions and decrease your fears. Also look carefully at the things you are concerned about or afraid of, and see if the fears are are realistic. Maybe you already have solutions for some of the problems that you think you might have to face.

Find ways to get on with your life in as many ways as possible, and do not let the uncertainty stop you from making whatever plans you are able to. Even a clear diagnosis would not confer 100% certainty what will befall you in future. Be prepared to be flexible and make changes as you go, but do not let uncertainty stop you from living your life.

Do whatever you can to make your body feel good, to minimize symptoms, and to maintain your body – for example, eating nutritious food, reducing stress, exercising, getting enough sleep. You need to do your part to make the body’s condition optimal for healing. Once you are doing this, let it go, acknowledging that you are doing all you can and the rest is up to nature.

Brian Grady, Ph.D.