Chronic Illness and Fear

Hello my Zebras and Spoonies! Thanks for coming and hanging out with me today, I’m glad that you are here. Today I am going to be talking about the relationship between chronic illness and fear. Because I wish that more people understood that having a chronic illness also means having chronic fears.

When you have a chronic illness, it is inevitable that you will play the “what if” game from time to time. We need to because it helps us plan for the future. We project into the future and consider what our prognosis is then ask “what if this happens?” and “what can I do to be prepared for that outcome?” This can help us better cope when things come up. And things will come up, because that’s the nature of having chronic illness.

But the “what if” game can also be a trap that leaves us only focusing on all of the things that we feel are the worst possible outcomes for our illnesses. It can leave us feeling afraid for our future. When our prognosis is poor or projects an outcome that is highly undesirable for us it only augments that fear.

Often times, providers will try to comfort us by telling us that our illness isn’t correlated with an increased mortality risk. But these comforts are missing the mark for a few reasons. The first reason is that no one is collecting data on all the things that happen because we have an illness, but aren’t really the illness. Like with having Postural Orthostatic Tachycardia Syndrome (POTS). There is no correlation to having an increased mortality. But that data is incomplete. Having POTS means I am at a higher risk of having a fall and hitting my head. There is a correlation of falls with a head strike and mortality. But when these events occur, it’s not documented as a head injury caused by POTS but as a head injury being caused by a fall. Not to mention that having any chronic illness increases the risk for suicide. So, no one is looking at the data in a way that connects these secondary causes to the actual source: the chronic illness. That leaves many of us wondering if there really isn’t any increased risk for death.

The second reason that this comfort misses the mark is that most of the times our fears are not actually related to dying. Many times, the things that we are most afraid of are the things that we feel our illness could strip away from us and leave us no longer being ourselves. For most of us, this includes a fear of the brain fog becoming do severe that we can no longer maintain a functional hold on reality. But these fears can include many other things. I personally am afraid that the joints in my hands will degrade enough that I will no longer have the fine motor skills to engage in many of the creative crafts that I so enjoy. I fear the day that the bones in my feet are going to cause me to loose the ability to walk and to no longer be able to be a bedside nurse. I fear that I will develop dementia since having ADHD and the antihistamines that I need to be on both increase my risk. These things are a fundamental part of my identity and loosing them seems like loosing myself. None of these fears involve my dying. Instead, these fears center around the idea that my chronic illness has the capacity to attack the very core of how I define myself.

The last reason that this comfort misses the mark is that it fails to understand the “what if” game and the way that playing it is part of having a chronic illness. This means that there are times that we are asking are providers “what if” questions in an effort to better understand our options and our prognosis. These questions do not always reflect that we are feeling afraid of those outcomes. It could simply mean that it is an outcome that is possible and we are now trying to consider the impact that could have on our lives. There are many possible outcomes that I have considered that are not desirable and would require significant changes in my life, but also don’t evoke fear for me.

I personally believe that having fears is a normal part of being human and that this doesn’t make us unhealthy or abnormal. How we manage our fears is what will determine if those fears are impacting our lives in ways that are pathological. Because of this, we need healthy coping skills to help us manage all these fears that inevitably come up when you have a chronic illness. One of the best coping skills we can use is to just talk about them. However, this is often misunderstood and over blown by providers. Just because I am talking about feeling afraid of something doesn’t mean that I need a new treatment or a new medication. Usually, I am just looking for the provider to help me gauge how likely that fear is to become reality. If I can tell myself that there is a low chance of something happening, it is often easier for me to set that fear aside. However, if it has a pretty high probability of happening, then I do better by starting the problem solving before the fear becomes reality.

Well, that’s about it for my rambling today. How about you? How do you tend to handle your fears? I’d love to hear what coping skills work for you! Thanks for coming and spending some time with me. If you like what you read, click on that like button. It really does help! Until we talk again, you take care of yourselves!