Doctor I Don’t Understand! Pt 2

A Guide to Asking Your Doctor Questions to Understand Your Diagnosis

Part 2

by Dr Makini McGuire-Brown

Today we continue with our 10 question guide to understanding your diagnosis, all a part of our new series on Patient Tips. So let’s remind ourselves of what we are trying to accomplish. Better outcomes of an illness derive from patient motivation and patient motivation is best come by through knowledge. A patient who truly understands his/her diagnosis is more likely to understand the treatment and therefore more likely to commit to it with a positive attitude which makes all the difference. So to this end we started our ten question guide to asking you doctor questions to understanding your illness. In the last article we explored questions one and two in depth. Today we will do the same for questions 3-6. Here are those ten questions again:

1. What is the name of my diagnosis?
2. What made you come to this diagnosis?
3. How will it affect my body?
4. How will it affect my mind?
5. How will is affect my job?
6. How will it affect my social circumstances (family, friends, relationships, hobbies)
7. What is the natural course of the illness?
8. How can it be treated?
9. How does treatment affect the course of the illness?
10. What can I do to help myself?

Questions one and two dealt with a technical understanding of the illness. Questions 3-6 deal with the human aspect and brings it to the level of the individual.

How will it affect my body?

You want to find out how the illness makes your body feel. Which parts of your body will be affected? Will it be painful? Can you still use your body in the same way that you would before. Never assume that you know what a disease may feel like. You may understand the main organ involved but not be aware of other effects. For example, someone with end stage kidney disease could understand that their kidneys aren’t functioning well and so they can’t create urine. They may understand that this means excess fluid builds up in the body causing it to swell. However, by asking “How will it affect my body” a conversation can begin that covers all symptoms experienced from head to toe, why, and advice on how to fix it or improve it.

For some patients with end stage kidney disease the swelling is not as frustrating to them as the itching of the skin. Most people would not even think about itching of the skin when they think of someone having kidney problems. But this happens because of the excess salts, that cannot be cleared by the dysfunctional kidney, depositing on your skin. This may be the most frustrating aspect for some patients or perhaps the significant decrease in appetite.

In summary, it is not easy to know all the experiences you can expect only from understanding the overview of the illness. You should ask and be particularly interested in hearing all possible symptoms from head to toe.

How will it affect my mind?

Apart from the physical effects, the mental effects are of paramount importance. This can be understood from a few perspectives. Firstly, if the diagnosis is one of a mental illness then most of the conversation will revolve around this question. You need to try to understand what this illness means for how your mind now functions. Mental illness is complex and so we can attempt to do justice to it in another article. However, many other diseases can affect mental health. For instance some people with cancers want to know “what did I do wrong” or “why me?” There can be a feeling of guilt or blame or desolation. Not every diseases is your “fault”. Genetics plays a major role in many diseases.

There can also be feelings of shame. This can come from feelings of guilt for example in a case of contracting a sexually transmitted infection, or it can come the symptoms of the disease. Skin conditions like psoriasis can lead to one being ashamed of their body, a reluctance to expose areas of their skin and a feeling that others are judging them as contagious or simply gross. Psoriasis of course is neither of those things, it is simply excessive growth of layers of skin due to immunological reasons (related to your immune system).

Forewarning of possible effects of certain diseases on your mental health can prepare you and allow you to stave them off. You can also seek out necessary support. This question is essential and yet often overlooked when trying to understand a diagnosis.    

How will it affect my job and social circumstances (family, friends, relationships, hobbies)

So much of what encompasses you and your life involves your social situation. Some people are really close to their family members, others schedule their lives around a hobby while others are work-horses and still others need their friends. Understanding how an illness can affect your norms is extremely important. Disrupted norms can drive some people into varying degrees of depression. A depressed mood is never conducive to optimal disease outcomes.

A heart condition can completely change many aspects of your life, including those related to exercise, outdoor activity, diet and alcohol. Certain heart disease can limit your ability to do cardio-intensive activities. Depending on your age and the condition this may be as simple as being able to play with a child. It can have a profound impact on you when children ask to play, as they usual would, and you can no longer oblige.

Some diseases also present entirely new challenges for your family members. You may need more hands on care. This can mean more time or money from them. You may need a completely new diet which can also mean more time and/or money from them. Your personality can change, your goals, desires, attitudes, so many changes; this is sometimes just as hard for a spouse or other loved one as it is for you.

Many diseases have significant effects on what your normal life is like, you may lose your job and career completely. Asking this question is salient to a complete understanding and better preparation.  

What is the natural course of the illness?

I cannot emphasise the importance of this question enough. The natural course of an illness means, “how does it usually progress?”. Perhaps after diagnosis it is easily treated and you recover within a few days or weeks, like a common cold or the flu. Perhaps it is a disease that may never really goes away but it can be controlled like high blood pressure. Perhaps it is a disease that has repeated flares, meaning it can be controlled for a while and then you get an intense worsening of symptoms, like lupus. Perhaps it is a disease that progressively gets worse and worse and worse like ALS or motor neuron disease. Perhaps it is a disease that has different natural courses in different people like multiple sclerosis.

It is very important to understand the natural course of the disease, to manage your expectations and management plans. People very rarely recover from stage 4 cancer, people very rarely recover from ALS. These diseases require a different approach and attitude than recovering from a flu or changing your lifestyle to treat and improve your blood pressure or blood sugar levels. This is not about losing hope or faith but all about understanding and knowledge.

You want to give yourself the best chance to treat your illness while living your best life and this can only be achieved through knowledge.

So those are all the questions that we will cover today! We will have one more installment to complete this ten part guide but until then continue educating yourself!

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