Diagnosis Denial

by Dr Makini McGuire-Brown

Many who sing the tunes of the legendary Bob Marley were not even born when he died. Bob didn’t have to die at such a young age. Although he was diagnosed with melanoma it could have been treated surgically. Many black people today tend to believe that “black people don’t get skin cancer”. This is not true. It is just as inaccurate as “men don’t get breast cancer”. There is a certain tendency of human beings to deny things that they don’t want to believe. While wanting a second opinion is every patient’s right and indeed doctors are human and therefore fallible, diagnosis denial can be deadly and have damaging effects on you and your loved ones.

In this first article in our Patient Tips series let’s see how to address diagnosis denial!

In my experience there are a few reasons for diagnosis denial:

1. Lack of understanding
2. Fear
3. Lack of trust

Lack of Understanding

I am a strong advocate for patients being educated about their condition. I take my time to ensure that patients have a clear understanding and can relate back to me what their medical issue is. Admittedly, not every doctor is as diligent about this as they should be. It is your right however to have you condition explained until you understand. Additionally, lack of understanding breeds diagnosis denial which leads to delays in treatment which leads to worse outcomes. One of the worst conditions to experience diagnosis denial with is any type of cancer. Cancer survival depends heavily on beginning treatment at the earliest possible stage. Delays caused by hopping from doctor to doctor until you hear that you don’t have cancer are inadvisable.

Understanding is essential but delays are detrimental. How do you get understanding without the delay?

Firstly, ask your doctor! You are allowed to ask questions, ask more questions and then follow those with more questions! Secondly, do reading on reputable websites such as CDC, WHO, WebMD, Mayo Clinic, Uk.Gov, PAHO or your local ministry of health publications to read more about your condition. Then, go ask your doctor more questions!

Although hearing other patient’s stories can be helpful, at times it can also be harmful. No two patients have the exact experience or the exact cancer. How cancer behaves and the management needed can vary widely from person to person. Not all thyroid cancers are the same. The same goes for other types of cancer and other types of diseases. There are differences that many don’t understand and so it can be misleading to expect that someone else’s story could be used as a prescription for yours. So while there is strength in support and it can be psychologically uplifting to know that others are going through similar experiences, beware that similar does not mean same.

On a similar train of thought, symptoms do not always add up to the same solution. One person can have a cough and swollen lymph nodes and have a common cold while another could have HIV. So be very careful about comparing symptoms with others. You cannot be in denial about your diagnosis just because someone else had similar symptoms and a different diagnosis. Instead, what you can do is ask your doctor what made the difference. What made he/she sure about your diagnosis.

These suggestions can bring you to a better understanding of how you got diagnosed with your condition and help you be better able to accept it.

Fear

Fear is an interesting emotion, it can propel action or be debilitating and even when it propels action one sometimes questions how logical or productive the action really is. I’m not saying not to be afraid. I think it’s unreasonable not to expect some amount of fear when someone receives a new diagnosis. But I do believe that you shouldn’t make any decisions based on fear. Decisions should be made based on information.

So while fear is an emotion that may arise we should allow time to process the fear, feed it with information and see what happens to it. Maybe the fear turns into understanding and a plan of action. In this case make decisions with this mindset. But, maybe it grows, in which case you may be one of those people who needs a dedicated support person. This may be a family member or friend but maybe a therapist. Mental health, strength, fortitude and a positive attitude is essential for the treatment of any disease.

Most importantly, fear may return. There is no absolute remedy for not being afraid and indeed no reason for a remedy to exist. Be afraid, but feed that fear with information and go from there.

Lack of Trust

Some patients just really have no confidence in the doctor delivering the diagnosis. This may be because of previous bad experiences or because the doctor did not do enough to explain how the diagnosis was arrived at. The physician-patient relationship relies on trust. There must be trust in the partnership for quality care to be delivered. Therefore a lack of trust will not auger well for treatment. In this case seeking out a second opinion from a doctor that the patient trusts is advised. The root cause of the denial of the diagnosis in this case can actually be solved by replacing the doctor with another doctor that the patient trusts.

There are many permutations and combinations to this issue and not one that can ever be exhausted in one piece but what I do want you to take away from this is

1. Diagnosis denial leads to treatment delays and poor outcomes
2. Three main reasons for denial: lack of understanding, fear, lack of trust
3. Address the reasons
   • Lack of understanding- ASK YOUR DOCTOR QUESTIONS! TONS OF THEM! Do research on reputable sites and ASK MORE QUESTIONS!
   • Fear- Feed the fear with information! More fear- seek out support; less fear- make your action plan
   • Lack of trust- seek a second opinion and probably continue care with a physician that you trust.

I know it can still be hard to know what questions to ask or understand the complicated information being thrown at you! Don’t worry keep following our Parley Blog and look out for the next article “Doctor I don’t understand”. I’ll guide you through how to go about trying to understand.

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