In the 1960s, a collection of short stories with the title “The Loneliness of the Long Distance Runner” was published by Allen Stillitoe. I never read the stories but the title always intrigued me, and now that I have heart failure it intrigues me even more.
According to the website booktrust.uk: “The title story in this classic collection tells of Smith, a defiant young rebel, inhabiting the no-man's land of an institutionalized borstal. As his steady jog-trot rhythm transports him over an unrelenting, frost-bitten earth, he wonders why, for whom and for what he is running.” (A borstal is a youth detention center in the United Kingdom.) So why does the title of the book intrigue me? Because managing a chronic illness like heart failure is definitely a marathon proposition and can be a lonely journey.
So you probably wonder how I can refer to myself or my other companions in chronic illness as lonely? Don’t we see doctors, nurses, lab technicians, other medical professionals and pharmacists frequently? My posts are filled of conversations with friends, church companions and family members, and I’m sure my health challenged colleagues also have friends, family and caregivers who they interact with frequently. So how can we possibly be lonely?
The following are a few definitions and examples of sentences or phrases using the word lonely from the Oxford English dictionary:
The above words spoke to me of the loneliness of a chronic condition. You may have plenty of people who care about you and/or care for you. You may even see them frequently at medical appointments or as they help you to navigate the areas of your life where you need some help. But I think one of the things that make friends and family special is that you look forward to sharing experiences together.
Unfortunately, in the case of heart failure or other chronic illnesses, you can share tasks that must be performed to help manage your condition. Or you may share words where you try to explain what it feels like, or perhaps why you are so frustrated.
But until your friend or family or medical care provider member walks with the condition inside them each and every day, there is no way they can understand and relate to how you really feel. And to be honest, deep down that is the way you want this. You wouldn’t wish this condition on someone you did not particularly like, much less with the friends and family that you treasure. But not being able to truly share this experience does make you not just frustrated but really lonely.
The loneliness comes from the remote, unfrequented location of your condition. For example, with heart failure, the number of people who suffer from this condition has increased over the years. But I still like to think that it is not a common ailment (and certainly it seems to be a condition that is not even recognized much less understood by the general population). So you do feel like you’ve traveled to a remote island where you are isolated, or living in a community where you are miles from your nearest neighbor on a lonely street that leads nowhere.
That is the part that really hurts when you have a chronic condition. It is likely that your condition will never improve, and your ability to have more freedom and better health is not probable. You truly feel like you are on a road to nowhere when it comes to a cure. You may occasionally try to articulate this to your friends and family. But again, if someone is not walking in your shoes on the road to nowhere, how do they know how desolate your final destination has become, and how taxing and draining the trek to the destination may become?
Hopefully this post captures how patients can feel lonely and can lack hope even in the best of chronic circumstances. If you don’t have a chronic condition, maybe you can at least start to understand why the patient feels so frustrated and alone. You can see how discouraging and disheartening the condition can be, how sometimes you just want to curl up in bed and not face the world that has become a place that can be less than accommodating to the constraints of your illness.
But somewhere deep down, I think we all have a reserve of hope and resilience, even in the worst of circumstances. I think the solution for me was finding a way to inspire myself and others in the same leaky boat to nowhere. So I started writing this blog. I have begun to hear from some of you who read it and are also experiencing the limitations of a chronic condition. I have heard a colleague explain to someone at our church that my blog helped her learn about how heart failure works. (Or as I said to her husband in an aside – more to the point how heart failure does not work!).
A friend of mine recommended the blog to a colleague she knows who was just diagnosed with a heart issue. He got back to her immediately after reading a post that it was so wonderful because the blog was written in lay terms that he could understand. Not to disrespect the doctors who treat us all. They have tons of medical expertise and strive to keep us as functional as possible. But communication will never be completely on the same level because most of us don’t have a medical degree, and most (if not all of them) do not suffer from the chronic illness they are treating. I have street cred because I have been walking along this street, often confused, fatigued, and short of breath, for six years now.
So the blog is the first important step to helping not only myself but others. But now I need to expand. I need to try to convert the blog into a book to reach a wider audience. I’m sure there are others out there who need to know there are voices who speak in a language they can understand, and who has written postcards from the chronic road to mark the highlights (or maybe low points) of the journey down the road.
But I have also decided that perhaps face-to-face meetings with my friends and allies in chronic disease may be one of the best therapies for us. To look someone in the eyes and share the frustrations we are feeling is critical in helping us realize we are not alone, and we are stronger when we meet in fellowship. Plus, we can share lessons learned, and even small or maybe even significant successes along the way. So I have begun work on starting to form a chronic illness support group. More details on important life goal, such as when and where and the group will meet, hopefully in the near future.
There is another factor that motivates me. In the middle of the month of February, I had some low moments. And then one Sunday I felt really energetic and motivated. As luck would have it, on that same day I listened to a minister preach on the subject of the sermon that Jesus gave to a crowd of people on the plain. In case you are not familiar with that sermon, I refer you to the Gospel of Luke, Chapter 6, verses 20 – 49. This sermon includes the Beatitudes or statements of blessings. At first the blessings are on the classes of people that we would consider less than blessed – those who are hungry or grieving or ill or just down on their luck. But we find from Jesus that these people are blessed because they will enjoy a great reward in Heaven.
And the lesson I took from that Sunday morning is that while we are all broken in one way or another, if we have faith than we have been truly blessed. Regardless of the weakness in my heart, I have to admit God has blessed me with rich experiences I have had throughout my life, and with the gift of friends, family, a church and medical providers who watch out for me.. So if I am blessed, I also feel that I have a responsibility to pass the comfort and blessings of faith on to those who are broken by their illness.
The more I think about starting a group for chronic illness warriors the more excited I get. Let’s just consider this to be a running club for long distance chronic illness runners who are working through their lonely broken state and rejoicing in their blessings. And again - keep an eye out for more details to come soon in this blog.
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.