Why I Made the Conscious Decision to Be Totally Honest About My Chronic Illness

A doctor recently described me as an “enigma.” I think he meant it as an endearing comment, but I took it as a compliment regardless. I was born with congenital heart disease. My heart has a number of defects that are rare and very complex to treat. From a young age I lived with the prognosis that the condition would quickly erode my capacity and that a heart and lung transplant would eventually be the only long-term solution.

My chronic illness has meant that fear has never been very far away. I write this from my hospital bed, cautiously hopeful that I am on the other side of an episode where fear has never been more powerful. Still feeling fragile and very much questioning the strength and sustainability of my body, I’m again reminded how much of an impact fear has on our resilience and well-being. 

Luckily, I married a wonderful woman who has stood by me every step of the way. I have traveled abroad and have also built a career as a youth worker, counsellor and teacher. Through my work, I have had the privilege of meeting some extraordinary people and witnessing some incredible acts of courage. In many ways, I am grateful for my chronic illness because I wouldn’t have become the person I am without it. But with these stories of success and pride, comes the inevitable struggle that runs parallel to it. The times of crisis, the secondary illnesses, the many seemingly endless bad days and coping emotionally with the eternal battle of trying to find the right balance between living life to the fullest and the need for rest and moderation.

To me, chronic illness is like looking in the rearview mirror and seeing a tailgating car behind you.  The car appears close during times when I’m unwell and is more distant during stable times — but it’s always there, as is the accompanying fear.     

It has taken almost 38 years of ups and downs, but the prospect of a transplant is now, as my doctor puts it, “on the table.” Getting to the point of transplant hasn’t been what I had imagined it to be. Rather than the gradual and insidious decline that I always pictured, I have deteriorated very quickly, caused by reoccurring secondary issues that led to multiple hospital stays. I always believed I would somehow be able to cope better when the worst happened because illness had always been a part of my life. It wouldn’t be like a sudden diagnosis — or so I thought. Despite my intellectualizing, I had little chance to prepare.

I am very critical of so called “motivational” quotes or material that simplistically tells us not to be fearful, that it’s all “mind over matter” or that we should always live life to the fullest — like it’s that easy. The problem with this simplistic thinking is that it denies the individual’s experiences of illness and the grief of being unwell. It undermines the enormity of things like becoming immobile, losing employment and, of course, the mental struggle of it all. Instead, society seems to want people with chronic illness or disability to always be “strong” or “inspirational,” and in the telling of these narratives, the struggle is often minimized and emotions dampened. It’s easier for people to switch off from engaging with this, which can create a potentially very lonely, silencing and marginalized place for those with chronic illness or disability.

Until very recently, I always found myself trying to soothe the fears of people around me. I always put a positive spin on how I was feeling, not wanting to worry others, but also because I felt like I should be the “strong one” the one who could manage on my own. These beliefs worked when I was stable and well, but they were much harder to sustain on days or periods when I was struggling.  During these times, trying to put a positive spin in order to soothe people’s worry was exhausting. It brought on anxiety caused by the need to appear well and isolation as I tried to manage alone.

There was also a fear that people wouldn’t react well if I told them the total truth. Maybe they would distance themselves or be judgmental at my inability to cope. I have now made the conscious decision to be totally honest — it has been so freeing, lifting a huge burden off my shoulders. I have discovered that by minimizing times when I was not feeling well, I was inadvertently robbing people around me of the chance to support me. 

Where there is fear, there is also anxiety, and it can quickly turn into depression if it isn’t shared with others. In my experience, attending to either fear or anxiety is something the medical system doesn’t do very well. It feels like there is a total denial of its existence. It’s not only frustrating, but it also doesn’t take into account the importance of emotional states on well-being. There is much more to people than their diagnosis or their current situations. Nurses are usually the best at it and more attuned. It has been a huge relief when a nurse or, luckily for me, a doctor who was prepared to have the hard conversations. I have observed the same relief for others during my many stays in the hospital. I could see the mental and physical difference these emotional conversations immediately make. The medical model needs to recognize that patients experiencing varying levels of fear, anxiety or depression are not the exception, but the norm.

In my work, I have always believed in the importance of finding individual ways to cope with difficult situations, but nurturing and maintaining strong relationships are also needed for our well-being and sense of belonging. These are the antidotes to fear, anxiety and depression. As I was assisting others with this professionally, I was neglecting it for myself.

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