One of the reasons I started writing this blog was to communicate to anyone who was interested in learning about the challenges, and occasionally even the victories, of being a heart failure patient. I have covered a lot of topics, medical, spiritual, and comical, to illustrate life with a chronic condition. Now I need to discuss the feeling of being isolated from those your peers.
I also need to explain to those who fall into the category of loved ones how to relate to a patient who seems to be overcome with, even obsessed with their chronic condition. I would argue that the patient is not obsessed but is adapting to a new way of life requiring a high level of discipline as he or she carefully monitors many vital signs and factors.
I have studied blog sites of people who have a wide range of chronic conditions. They use a variety of methods to illustrate the fatigue, eating restrictions, exercise limitations and other challenges associated with a chronic illness. One theme that recurs is the feeling of loneliness someone with a chronic illness experiences even when he or she is rich in friends and family.
Some people referred to feeling like a leper. What is a leper? The Merriam Webster Dictionary defines a leper as: a person affected with leprosy; and a person shunned for moral and social reasons. But none of the comments about feeling like a leper were actually written by people who had leprosy. The commenters were not talking about the challenges of dealing with the condition of leprosy. Rather, they were talking about feeling shunned by their peers. Why would that be?
One comment about feeling like a leper came from a woman who suffered from Hepatitis C. Why on earth would one be inclined to shun a Hepatitis C patient? Well, there may be a misunderstanding that people who have this condition are drug abusers. There is a similar misconception about people who have a liver disorder. There may be a concern that these people are alcohol abusers. I remember talking to a nice woman in the waiting room of my heart failure doctor's office. She was in my age group, and she had undergone a liver transplant. She looked awesome. She told me that people sometimes were distant, wrongly assuming that she was an alcoholic because she had to have a liver transplant. So these are examples of how people can be shunned because of misconceptions about their chronic disorders.
The shunning may result from being poorly educated about a condition and whether it is something that is contagious. For example, people mistakenly believe that they can get HIV Aids or MERS by being exposed to someone who has these conditions. So they avoid patients who have these conditions.
But then I found a chat page for breast cancer patients. Breast cancer is not something that is caused by substance abuse, nor is it contagious. So why would these patients feel like they are being shunned?
One patient said a close friend told others in their friend group that she did not want the breast cancer patient at her birthday celebration. The reason? She wanted it to be a happy time and did not want anyone with cancer there as it was too depressing. This seemed on the face of it to be a selfish statement. But I am trying to learn to be less judgmental, especially when I do not know all the facts. For example, I do not know what was going on in the life of the person who made this statement. I can understand, however, if the breast cancer patient decides that it may be better from her wellness perspective to put this friendship on hold for a while.
I found examples that were not so much being shunned, as just examples of people not knowing what to say. For example, another breast cancer patient said: “I am no longer fun and energetic. I’m made to feel that my fears about what I’m facing are without merit by some family and friends. I was told by a close family member that I could get hit by that bus that goes around striking people, and that I need to quit worrying about this.” I think the best way to describe the breast cancer patient’s reaction was that she felt her legitimate concerns and fears were minimized by her friend. Perhaps her friend was well meaning but did not know how to react to the real fear that something very bad might happen to her friend.
I do not recall that anyone has ever used the bus comment with me. (Plus one wonders why you would tell a person who has some anxiety over her condition that she now needs to be anxious and on the lookout for runaway buses!). I do get comments about worrying too much, or being too anxious. I wish someone would direct me to the website where people can determine the appropriate level of worry for any particular illness or malady. Maybe if I had guidance on an appropriate anxiety level for a heart failure patient, my outlook would brighten. I might be inclined to plant roses, skip down the sidewalk and eat chocolates.
But returning to the hit by a bus comment, again I think it is important to note that the friend is not shunning the patient. Instead, the friend may be treating the breast cancer patient like an alien. In this regard, I’m not talking about an extraterrestrial alien. I am referring to aliens who have settled here from other countries, and who may have different customs and accents. I suspect aliens may at times feel like they are not being heard or appreciated, maybe because of a language or cultural issue.
This also applies in a way to people with chronic illnesses. People may react as though you are speaking a different language. Well, that may be a reasonable reaction from your peers. Let’s be real - do the majority of your friends and family speak in terms of ejection fractions or fluid restrictions or sodium intake and diuretics?
Sometimes you also feel like there is just so much melodrama associated with your condition. I don’t know what people with cancer or lupus or other chronic illnesses are told. But in my experience with heart failure, there was a point during the diagnosis and treatment phase when something shocking is said by the medical team that just caught me off guard.
In my case, the moment occurred on the phone when my cardiologist told me that he wanted me to meet with an advanced heart failure doctor to see if I was a candidate for a heart transplant. It wasn’t the term heart failure that caused my heart to stop beating. I had heard that term many times and was used to it. No, my heart almost stopped because of the words “heart transplant”. It was surreal. It wasn’t as though I had not heard those words before. But I had never had a fear or even a thought that my heart would need to be replaced.
As a woman who goes through a breast exam or a pap smear each year or two, the possibility of cancer is something I regularly confront. Because I had those exams starting around the time I was 18, I was acquainted with that fear. My father had Alzheimer’s disease, so I sometimes wonder if this disease will find me. But no one in my family had any heart issue, much less one that required replacing a heart. So yes, the potential for a heart transplant is one that I still have a hard time processing. So pardon me if it may seem like I’m a little dramatic.
Despite the panic that ensued with that life-changing conversation with my cardiologist, I knew that the problem wasn’t going to disappear if I just went to bed for a week. I made appointments so that we could figure out how bad my heart failure was. I confided in my sister, a few friends and my minister what was happening, along with my fears. But I tried not to burden other people with my issues. Then someone in my circle of daily life told me that she and other people felt helpless because they didn’t know what was going on with me. Another friend told me that if people do not know the challenges you are dealing with in your life, then how can they pray for you?
So I started to tell people much more about the heart issues that seemed to run rampant in my life, and the frustrations of: low blood pressure, the unpredictability of the condition, and just the wearing fatigue I seemed to feel on many days. I provided information that I hoped would address concerns of friends when I failed to attend events (especially night events) that I previously attended, or because I seemed to be such a picky eater. I tried to explain the diet and fatigue challenges I had.
There were times it seemed like loved ones may have doubted the situation was really as bad as I said. So much so that I wanted to come up with a virtual reality game of heart failure, where maybe people could get a temporary, real glimpse into what it feels like. Maybe then it would be easier to understand how my life had become a series of trade-offs and adjustments.
But then I realized that the problem might be that I was giving too much info to my loved ones – way too much detail that they could not process! I needed to understand that my friends and family did not want to become cardiologists and heart failure doctors. So to those who have chronic conditions, here is how I would coach you to communicate with friends and family. They need to know that you have challenges from your chronic condition. They don’t need to live and breathe each challenge with you. Of course, if they ask for more detail, use your judgment as to how much is enough.
To those who have a loved one with a chronic condition, here is how I would coach you. I suspect your loved one is dealing with some debilitating symptoms (e.g., shortness of breath, dizziness, etc.) and a daunting treatment plan (chemo, radiation, heavy duty meds, electronic devices implanted in their bodies). Unless you are dealing with this same treatment plan, you likely cannot imagine how the patient feels on a given day. So when the patient says he or she does not feel well, or has to decline an invitation to something that to you seems really fun, avoid the urge to second guess and judge. Instead say something like: I really cannot begin to imagine how your condition impacts you. But I know that the impact is something that you struggle with. We will miss you, but we understand. Just know we love you.
For both the patient and the loved one, no matter what your religion, know that God loves you. If you have faith, God will help each of you maneuver and thrive and comfort one another during these challenging times.
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.