Please Don't Assume My Bad Days Are Always Because of Chronic Illness

Today, I’m upset, but it’s not because of Parkinson’s. Last weekend I was frustrated, but not because of the pain. Yesterday I was angry, but my arthritis was not the reason. Today I am sad, but not because of what I am going through. Yes, some days my chronic illness struggles do cause these emotions and reactions, but today is not one of those days. Sometimes I struggle with controlling my emotions, and sometimes my reactions get the best of me. My disease can be an easy scapegoat and excuse, but don’t assume it is just about my disease. I am human, and I feel and react like everybody else. Please don’t dismiss me by simply blaming my condition.

What is Parkinson’s Disease?

Have you ever been in a situation or conversation where you thought someone really did not understand where you were coming from? Has there been a time when your actions, reactions, emotions, or motivations were misjudged or misinterpreted by others? Are there times when even you are unsure of where the emotions, reactions, or motivations are coming from?

Was it frustrating? Did you feel misunderstood? Did you feel dismissed? Was it discouraging? Did you feel isolated? Did it make you doubt yourself? Chances are, you felt all or some of these things at least some time in your life. Now, take that and multiply it by about 100 – that, so often, is where I and others battling chronic illness find ourselves.

There are days that are hard.

There are days that these emotions are all the result of my struggle.

There are days when even I am surprised by the reactions and emotions I battle.

There are days when even I cannot tell what the root causes of these emotions are.

One of the hardest parts of battling chronic illness is the emotional, mental, and relational toll it can take on a person, relationship, family, and friendships. The uncertainty that these battles bring can be overwhelming. By uncertainty, I am not referring to the future, but the present – a present in which even I am sometimes uncertain of my motivations, emotions, and reactions.

Sometimes I can very clearly see what is driving my feelings and reactions.

Sometimes, I completely understand why I over-reacted, got mad, was depressed, or snapped.

Sometimes, the weight of what I am bearing is overwhelming and it gets the best of me.

Sometimes, I clearly see that it is about my disease, condition, and lot in life.

Sometimes, though, it is not about my disease, and it is those times when my feelings are dismissed or brushed aside by this assumption that are the hardest. I am human like everyone else. I make mistakes, get overwhelmed, feel sadness, get frustrated, react in anger, or overreact to some things. When I do, nothing is more frustrating than hearing or feeling that these emotions are dismissed by simply chalking it up to Parkinson’s, arthritis, chronic illness, chronic pain, or any of the other struggles I must navigate on a daily basis.

Not trusting myself is a hard place to be. Not feeling that others understand or that they are misjudging me and my motives is hard. The uncertainty and isolation this brings are difficult. Even more than that, though, not feeling like I totally understand myself and my reactions is even more unnerving.

While we all have times when we are unsure of ourselves or doubt and question our motives, chronic illness often amplifies it. It is challenging, not just for those surrounding me, and patients like me, but for those of us living with these conditions, to honestly evaluate and answer these questions. Caregivers feel like the patients do not see what is really happening, and patients feel like their disease is constantly being blamed for what would be normal reactions and emotions for anyone else. When this happens on either side, the other may feel that they are simply being dismissed.

The uncertainty and self-doubt this brings has broken me at times and added another layer of challenge to relationships that are often already strained due to the challenges of chronic illnesses. Both sides are trying desperately to get the other side to see and acknowledge whether or not the disease is the root and underlying cause of what is currently happening and being felt. As we each try to convince the other that their perception is right, the other feels dismissed.

Over these last few years, there have been many such conversations in my life. Conversations in which motives are justly and unjustly applied, motivations are clearly seen or assumed, and times when I have felt affirmed or dismissed by those around me. In some ways, this is a struggle for everybody. We want to be understood. We want to be evaluated correctly. We don’t want assumptions made.

While this is a struggle for everyone at some point or another, individuals and families battling chronic illness experience it even more, because judging/discerning another’s heart and motives is hard, and sometimes admitting the source and motivations of our own attitudes and actions is even more challenging.

When this occurs, it becomes that much more important to take a step back, make sure emotions are in check, and simply take time to listen to each other, truly hear, and then honestly evaluate the situation. Too often, we try to have this conversation when we are emotional or worked up, we fight to defend our perspective and point of view, and we fail to listen to another and be open to what they are seeing.

Sometimes, it is because of my Parkinson’s; sometimes, it is not. Sometimes, the perceptions of those around me are correct, and sometimes they are way off. Sometimes I am dismissive and sometimes, I am dismissed. But the more we can openly and calmly discuss and hear from one another, the better chance we have of truly seeing what is going on, and honestly dealing with issues that come along. When we seek to understand each other more than we seek to get our point across and be understood, we will never be dismissive or feel dismissed, and chances are, we will have more success working through these issues and determining what is and is not the illness we are battling.