I am on a two-month break from my heart doctors and have been using the time to see some other health care providers. Yay! Not that I don’t love my doctors and nurses, but if there is an extended time between appointments, in my mind that says I am still doing okay.
I still have the rest of my body to look after, so I use the time to catch up on other doctor appointments. In one of those appointments, I was talking with a physician’s assistant about an over-the-counter medication she had previously recommended for a non-heart related medical issue .
I mentioned that when I looked at the product in the drugstore, I noticed a waring that people with circulatory issues should avoid using the product. I told the physician’s assistant that I thought the heart health issue I had might well be considered a circulatory issues ince it decreased my heart pumping function. She asked me: "Oh, do you have heart failure?"
I was amazed! When I use the term heart failure, I can generally count the number of people who have heard of the term on my one hand and still have 3 fingers left over. The people who have any knowledge of the condition are either in the medical field or have a relative with heart failure. In this instance, the physician’s assistance qualified under both criteria.
As we discussed my heart failure, it became clear that this person had some level of frustration with the relative who had heart failure. It appeared that the relative was not good about going to see the doctor for routine tests, and may have even concluded that the diagnosis of heart failure was bogus. This is the second time I have heard a story about loved ones who had heart failure. The loved ones’ reactions, which I am thinking fits into the category of denial, was concerning because they clearly had the symptoms of heart failure and needed treatment.
Whenever I hear a story like this, I am perplexed. Yikes – it is hard enough for me to maneuver through life with the aid of the cardiac device and medications that are clearly improving my condition. What would it be like to live my life if I was not following the treatment plan? In a nutshell, I believe my life would not be worth living, or even worse, I might not even be alive at this point.
Of course, I think all chronic illness patients are familiar with the emotion of denial. When one receives a diagnosis of a serious, recurring condition that will be with you forever, the normal reaction is one of grief. Anyone who is familiar with the findings of Elisabeth Kubler Ross will know that grief has a number of stages which include: denial, anger, bargaining, depression and acceptance.
I have been through these stages (probably more than once) as I journey through the land of heart failure. But I eventually do work my way to acceptance. With acceptance comes the reality that there is still plenty of value I can contribute with a damaged heart, and I just pick myself up and start finding those things to do. And I am not the only chronic illness patient that deals with these stages – especially denial.
So what is it that make a patient deny a diagnosis of heart failure (or of some other serious illness)? I found the following explanation on the Chatelaine.com website in a December 21, 2018 article by Sydney Loney entitled: In Denial: Why do we often ignore medical symptoms when we know better? “ (Note: Chatelaine is a Canadian Magazine).
Ignoring symptoms of a disease with a high mortality rate is a surprisingly common phenomenon, says Dr. Kim Lavoie, co-director of the Montreal Behaviour Medicine Centre and a psychology professor at the University of Quebec at Montreal. “People will cognitively avoid things they don’t’ want to be real; it’s a natural defense mechanism, she says. Studies have shown the different ways it manifests – from using humour to outright refusal to acknowledge that an illness might exist.” (My only quibble is that I would argue that some of us may use humor to manage our anxiety as opposed to deny that we have the condition.)
Of course as Dr. Lavoie points out later in the article, denying that things are amiss leads to delayed diagnosis, treatment and outcome. The remainder of the article relates to helping doctors learn how to get a truer picture of what is happening from their patients and how to help them accept and learn to get help and manage their conditions.
Is there ever a time when denial can be acceptable? I found an article called Denial: “When it helps, when it hurt” on the Mayo Clinic website. Here is what it says:
So the important distinction that the article later makes is that that absorbing is a very short term, temporary process. So in my mind, it stands in contrast to avoiding which is long term and detrimental. Another important facet that the article notes for those of us in the land of chronic illness: "It isn't always easy to tell if denial is holding you back. The strength of denial can change over time, especially for someone with chronic illness — some periods are linked to less defensiveness, and at other times denial may be much stronger.”
So how can you distinguish whether you are in a helpful versus a hurtful phase of denial? I found an August 7, 2017 article by Kate Jackson on the Everydayhealth.com website entitled: “Denial, a shock absorber for people with MS.” In the article, Ms. Jackson interviews licensed clinical social worker Beth Kane. Kane provides the following as signs of when one might be stuck in denial:
Kane also points out that ignoring advice is different than disagreeing with advice or seeking oter options or another opinion.
You may wonder if I am exaggerating the damage that can be caused when one is stuck in the denial phase of grieving a chronic illness. I found a website entitled cfshelp.org. It is a website offering self-help courses and resources for patients who have been diagnosed with chronic fatigue syndrome. I found the article “Grieving your losses” by Bruce Campbell.
In that article, I found Campbell indicated that getting a diagnosis of chronic fatigue syndrome means being told you have a condition for which there are no consistently effective medical treatments and no cure. He said that ignoring the disease by continuing to lead a busy life or seeking a cure or trying special diets/treatments are all common reactions. Why is this, and what is a better alternative? Campbell says:
In the instances I have heard of, the common factor has been that the patient ignored sound medical advice. Usually it centers around refusing to follow the medication treatment plan, or refusing to take the tests that will help doctors determine the status of your condition, or perhaps refusing a medical device that could provide some improvement or save your life.
So what would I suggest to someone who is stuck in denial – or has a loved one that is stuck in denial? Well, prayer has always worked for me. It helps me realize that I am not in this by myself. But I think we need to be careful in what our prayers seek. Yes, a miracle cure would be – well a miracle. But I also hate using God like an on demand service. Instead, I pray for patience and understanding and a way to manage the illness so that I can do God’s work to the utmost in the time I have left.
For those who don’t believe in God, well I believe there are other avenues for you to explore if you are interested. Therapy helped me learn a number of relaxation and cognitive behaviors to help me quell the anxiety and learn how to live a productive life despite the illness. As the anxiety lessened, so did the stress which in turn helped my heart.
At the end of the day, it is up to each person to decide how they want to handle their chronic illness. In my mind, denial that is taken beyond a healthy level is an enabler of the chronic condition. I don't need to enable the enemy. The warrior in me looks to defend myself in battle. I have used prayer and therapy and support from friends and family to shield myself from the dangers and disruption of the illness, and yes sometimes as a weapon to fight back. Just call me the Xena of the heart failure world.
Melanie discovered that she had heart failure in 2013. Since that time, she has been learning how to live with the condition, and how to achieve balance and personal growth.