The benefits of giving everyone a break when you have a chronic illness.

I have referred in other posts to the frustration I initially experienced when some people acted as though I could still do everything I used to do pre-heart failure.  They thought I could follow the old diet, enjoy more than the occasional drink of alcohol, run and exercise and climb stairs the way I used to, and perform miracles fueled by adrenaline rushes.  As often as I tried to establish that a frail imitation was residing in the old Melanie’s body, it seemed that I could not get the point across.

I was very annoyed that people did not seem to get how much this chronic illness had changed me.  While I was thrilled that I did not look as awful as I felt, I sometimes wondered if people thought that I was making it all up and that I had just settled into a chronic laziness as I grew older.  Thoughts like this made me even more frustrated.  
​

As I began to interact with people who suffered from chronic illnesses, I realized that this is a typical feeling in the patient community.  Chronic illness patients sometimes feel that friends and family doubt how bad they really feel, even though they would never say those exact words.  Maybe it is the look on their faces, the tone of their voices, and the cajoling manner as they try to convince us (or maybe themselves) that it can’t be that bad.  A friend told me something he heard from a friend with a chronic illness.  She said:  "People think I fake being sick. Truth is, I fake being well!"  I felt like this woman spoke not only for me but for the multitude of patients who manage the debilitating impact of a chronic illness on a continuing basis.

I remember that my initial reaction for the first few years of my chronic illness was to feel like I was in court defending myself from the charges of being a chronic disease fraud.  I kept trying to give examples to my friends and family of what it felt like to feel so horrible despite how “normal” I looked.  Instead of making my case however, my arguments achieved an opposite effect.  Instead of wanting to pat me on the back and tell me they now understood how awful I felt, people just wanted to get away from me. 

Of course feeling that I was being shunned made me even more frustrated and I continued to attempt to justify the reality of what it felt like to have heart failure both to those I interacted with as well as to myself.  It was a vicious circle, especially since I couldn’t seem to convince anybody, including myself, that I had a serious chronic illness.  This made it enormously difficult to manage my expectations of living with heart failure for a substantial period of time.

I think it was writing this blog that helped me turn the corner.  I started to write one post about getting frustrated when people told me I looked normal.  I realized how irritated I was with these people.  And as I reviewed the language of the post, I realized – wow what a Debbie Downer you have become!  What happened to your commitment to try to shine a more positive light on managing a chronic illness?  What happened to your commitment to be more understanding and tolerant of your fellow humans?

I did some soul searching and pondered what I was really frustrated about – was it that I felt that people were minimizing my issues?  Or was there something more, something that maybe had to do with how I had in the past reacted to the concept of illness?  I began to realize that maybe deep down, my anger and frustration in part was aimed at me.

You see, I could remember saying some very thoughtless things throughout my life.  On the job, I hardly ever took any sick leave.  Sometimes I would have bad sinus headaches, as well as some stomach issues (mostly stress induced I think).  My colleagues would see that I was not feeling well and suggest I go home.  I would say really insensitive and ignorant things like: “Gee, if I went home every time I had a headache, I’d never be here.”  Choosing to tough it out was of course my own decision to make.  But my insensitive comments suggested that those who watched out for their health more (and probably in a better fashion) than I did were ultimately weak.

So it occurred to me that when it came to minimizing health concerns, I was an expert.  I was intolerant of illness in general, and mine in particular.  So maybe deep down I was reading too much into the reaction of others.  I began to realize that displaying a minimizing attitude was exactly how I would have reacted pre-heart failure if someone with a chronic illness tried to explain how bad they felt or how scared they were.   I began to feel guilty knowing that I was perhaps unjustly accusing others of having a reaction that I surely would have had. 

Why had I been so insensitive?  I recalled conversations with people who serious medical issue like cancer or issues that required surgery.  I felt very helpless.  I didn’t know what to say, and it was so hard to even look them in the eye.  If they saw the fear I felt for them in my eyes, that couldn’t possibly be helpful to them –right?  So like I think most people tend to do, I tried to turn the conversation to something else as soon as possible.  But I did care about them!  I would include these people in my prayer requests at church.  I would try to get periodic updates on how they were doing.  I really did care – but I was helpless to figure out the best way to show this. 

As for the insensitive remarks I made about my own health issues pre-heart failure, like most of us I wanted to think I was invincible.  So to dwell on whatever physical ailment I had at the time interfered with my vision of invincibility.  And so I went into my default mode – which is whenever I feel uncomfortable, I make light of it. 

I also think it goes deeper than just being able to put yourself in the other person’s circumstances and figure out what they must be feeling like.  In fact, I think most people don’t intend to minimize the circumstances.  Instead, I think they are trying to skirt the circumstances for a very human reason.  I think the thought that crosses most minds is the old saying “ there but for the grace of God go I”.  In other words, we fear that at some point, we might be living out similar circumstances.  We don’t want acknowledge those fears, so we just dodge attempts to discuss what is going on with that person and their chronic illness.  We want to avoid thinking about what we might do if we had to live like that.    

I think that the best suggestion I have is that the person with the chronic illness doesn’t want to make you uncomfortable.  They want to be around people so that they have some level of normalcy in their lives, but they also want you to understand that there are limitations that they now must work with that will impact how they interact with you going forward.  They are not trying to make an excuse, but want some level of acceptance for their new circumstances.

So now with the benefit of hindsight, what do I think is the best thing to say to a person with chronic illness?  I would suggest something like:  “You know, I can’t even begin to imagine what you are going through or the frustration that you feel.  But I do I admire you and I still want to do things with you that you feel comfortable doing.   Plus even with all the challenges you are managing, you really do look great!”  Maybe add the caveat that my sister and friends tell me: ”You set the pace”.  And this will give your friend or relative with chronic illness permission to set not only the pace of how fast a particular activity is performed.  It will also let your chronically ill friend set the pace of your relationship going forward. 

And now also with the benefit of hindsight, what is the best approach I can make to those who care about me?  How about something like:  “I really value our relationship, and I especially value that you understand how challenging my illness is for me.  Thanks for understanding that this a new and unusual time for me.  However, while what we do together may have changed, I believe our relationship has grown stronger.”    

Of course, it is possible that a friend or relative will still feel uncomfortable around you.  They may alter or even cut off the relationship.  But the reality of the situation is if the person is that uncomfortable with you, then the dynamic of your relationship has changed anyway, so you will be uncomfortable as well.  But know that there will be many other people or even new people in your life who are willing to interact with you so that you will have a fulfilling life. 

​Finally, I think the thing that is important to remember the words of Alexander Pope:  to err is human, to forgive divine.  I believe our faith should inspire us to follow that same path and give a break to those who care about us but are also managing their own fears and discomfort when it comes to interacting with us. 

I believe we also need to extend a break to ourselves  for not showing empathy to others with similar circumstances in the past.  But we also need to learn from our experiences and be more empathetic going forward.  Remember that our empathy needs to apply to us, to those we currently know, and to those we will continue to meet on the journey.  The result will be that each of us will receive many benefits.