New Health Project: Keeping It Real
In most of my articles, I talk about the numerous negative emotional and social impacts of asthma and that my particular brand of chronic illness has had on my daily life. I also always try to talk about how grateful I am that I am able to manage my diseases; I try to highlight positives that have come from my experiences with chronic illness. I often talk about working hard to live my life fully and making sure I am moving forward.
Limitations of living with a chronic illness
In keeping with this theme as my guide, I may be missing the part that perhaps needs to be talked about. I think, maybe, that does all of us a disservice. I see these platforms (I write for Asthma.net and LungCancer.net) as places where I want to have a positive impact. I want to expose my challenges but then highlight that I am finding ways to get on with my life. I don’t often write about the sorrow I feel, the loss I feel, or the days when I feel like life is passing without my engagement.
While I can write this article for my fellow asthma sufferers or for those in my lung cancer camp, it really can apply to the masses that suffer from chronic illness. How many of us have had to bow out of a family gathering or turn down offers from friends to participate in some exciting activity? How many of us feel the limitations of our illnesses on a daily basis? It can feel very isolating.
Impact of asthma on my social life
I am the type that always replies, “I’m fine," when asked how I’m doing. Even if I explain some issues, I follow it with, “But I’m fine.” I’m not always fine. For example, a few days ago I was invited to sit outside with 3-4 friends for cocktail hour. We have taken to our driveways for entertainment in the current environment. I had already gone for a very long walk and had to come inside and immediately do a nebulizer treatment.
I so wanted to join my friends but I knew that the next day I was having lunch outdoors with two of my children. The current weather conditions do not permit me, in good conscience, to have two days in a row of lengthy outdoor time. I wanted to be in top form when I visited with my kids. So I sat inside alone and lonely, (I’m a widow) and a little bit angry and a little bit weepy.
I rarely tell anyone when I feel like that... I want to be the picture of positivity. Who am I serving by keeping that to myself? Why do I think that I am not ‘sick’ enough to have the right to feel that way? How can I ever expect anyone to understand how it feels to be me when I won’t let them know what it’s like to be me?
Old habits die hard
This article has been a work in progress for many weeks because I have been trying to figure out why I put up those walls. A walk down memory lane suggests that I was raised to be a survivor, a fighter on some level. My childhood taught me that it was imperative that I keep my feelings to myself, “No one wants to hear your troubles.” There you have it; it’s what I know.
As a result of my upbringing, I think I must protect everyone from anything that may be negative. Rather than calling my feelings negative, how about I just call them real. That’s all it is, reality. It is ok for me to say how I’m feeling without following it up with, “But I’m fine.” I worry that if I answer honestly people will try to avoid the ‘whiner.’ That’s simply not true. If anyone does not like hearing an honest answer, “my breathing sucks today”... then that is on them. Anyone who knows me will tell you I am an upbeat, positive, smiling person. Letting my family and friends know when I’m having a bad day is not going to make them think less of me... it’s me that thinks less of me, and that is on me.
Working hard to be vulnerable
What I have discovered on my journey to write this article is that I think I am not sick enough and do not suffer enough to warrant any compassion or concern from others. That is most definitely on me. None of us should compare our pain, discomfort, sadness, loneliness, or fears to those of others and then think we fall short of deserving compassion. Our message to ourselves should NOT be that we don't deserve to feel what we feel.
We suffer in varying degrees every day. We feel the emotional and social impact of asthma and other chronic illnesses every day. We are in a constant struggle to maintain the good health we do enjoy. For some, it is fleeting. So our feelings are valid, our feelings are real and they are, at times, uncomfortable. To compare our illnesses to those of others and then deny our feelings about our own illness because it does not measure up, well it does everyone a disservice. We are at once telling ourselves we are undeserving but we are also sending that message to those who suffer similarly to us... most decidedly NOT my intention.
Being honest about the social impact my asthma has
So my work is to be honest with myself and others; to be much more compassionate with myself. I want to continue to maintain a positive mindset but to allow myself the vulnerability to feel what I feel and know it’s ok. While working on myself my hope is that I will learn to embrace joy with newfound freedom and gusto because I’ve taken down the walls; I am looking at life through my reality and not what I want it to look like for others.
Are you managing eczema with asthma?