Friday, June 15, 2018


When Your Invisible Illness Becomes Invisible To You


    I recently had a trip to the emergency room.  One of many, I’ll admit. But this one was different as it could have been avoided had I known what was happening.  The problem is, I didn’t see it coming, nor did I actually have the tools to. You see, my illness, which is primarily invisible on the outside, had managed to hide the extent of its recent progression from me by making itself invisible on the inside. So I misread my abilities and ended up in the emergency room.

    I wish I could say that this is an uncommon issue with chronic illness. But I don’t think it is.  We go through periods of intense flare ups, when we experience the full measure of our symptoms from extreme pain to mind numbing fatigue to the loss of physical abilities such as walking.  But we also go through periods of remission, when our symptoms seem to disappear. Although we understand that they are only in hiding during these times, the fact that we feel normal gives us hope.  And many times, a false sense of ability.

    It is during these times that the idea of an invisible illness becomes two fold.  Just like the world cannot see our illnesses from the outside, when an illness it is in remission, we cannot feel it on the inside either. It becomes esentially invisible to us as well.  And given the fact that we are chronically ill, when we don’t feel physical symptoms, we are very likely to give in to the idea that we are more physically able than we actually are. Why wouldn’t we want to believe we are better when feeling crappy is the norm, even if its only for a few days.

    The problem is that we aren’t truly better.  We are still as sick as always, maybe worse. We just don’t feel it.  We have no pain and more energy than we know what to do with. And our instinct is to get stuff done.  It’s hard to sit still and rest when your body feels good and strong. Especially if it hasn’t felt strong in months.  And even though the most logical thing on earth is to let your body use this extra energy to heal more, most of us use it to do all the stuff we cannot do when we are symptomatic.

    In other words, we act like our illness is gone because it has become invisible to us.  Case in point: for many summers, I have been able to help out somewhatwith yardwork by sitting on my butt and using a sharp saw to cut off the suckers that grow off the base of our trees.  Yesterday, I set out to do that again. I was in remission and feeling strong. I stayed in the shade and it was breezy so I didn’t notice the heat. I also didn’t notice how much my recent health issues had actually deteriorated my abilities.  So while I completed what in my mind was reasonable based on years past and the fact that I was asymptomatic, after finnishing I became symptomatic quite quickly in the form of heat sickness, dehydration, and a major migraine event that landed me in the hospital.

    By all measures of my past, I did everything right.  But my illness was underground and not giving me the signals I needed to tell me I was overdoing it.  It was invisible to me. Just as anyone walking by would have seen nothing out of the ordinary to cause them to say maybe I should stop.  My illness is invisible to them too.

    I do understand that this view leaves personal responsibility on the side.  But if you think about it, our diseases change day to day, and sometimes all we have to go on is the signals we get from our bodies.  Understandably we all should know our limits and do our best not to use them, but we are also taught to continue to stay as physical as possible so we don’t lose our abilities.  It’s a constant catch-22.

    So while we need to be aware of our limits and how far we push ourselves, others need to understand what it's like for us when we are suddenly faced with no pain and a normal body for awhile.  It's what we dream about. All the time. Of course we’re going to take advantage of it. And just like others cannot see the pain we are in most of the time, we cannot see when or how bad the return of our illness may be.

    So bear with us.  We are trying our best to navigate a constant roller coaster of symptoms that come and go, get better and worse, and do all of this with no rhyme or reason at all.  If it really were as easy as exertion caused pain and rest avoided it, our lives and treatments would be so much easier!