Caregiver Perspective: Compassion Fatigue

t seems ironic, but did you know that caring too much could actually harm you? There’s a fancy name for it called “compassion fatigue.” While compassion fatigue and burnout seem similar, they have significant differences.

Caregiver burnout occurs over a long time

• Characterized by extreme exhaustion
• High levels of anxiety
• Depression
• Weight gain
• Isolation from friends, family, all personal relationships
• Increase in addictions (caffeine, food, alcohol, drugs, pornography, etc.)
• Increase in medical issues such as heart disease, high cholesterol, type 2 diabetes, stroke
• Lowers immune response to illnesses
• When the individual has had enough one day, they leave and never look back

Burnout usually occurs after years of pent up frustration and stuffing emotions and anger away, until the feelings burn out and no longer exist. The emotions and the desire to remain in the role go up in smoke; they “burn out.”

When You’re Fighting Alone

Living with a disease like Multiple Sclerosis can be a difficult task, particularly as you grow older. Having a good support system is crucial to living successfully with this illness. Not everyone has that though, and for some people, like myself, even having a good support system doesn’t mean we don’t sometimes feel like we are fighting this battle alone. I talk with a lot of people with MS, and I am often left with the thought that I have an interesting perspective as someone who has had the disease this long, is this age, and is single. With no family of my own and a career taken by my disease, I find that I face some struggles in ways that others don’t. So, I’m here to share, primarily because there are others like me, and no matter how minor we are in the grand scheme of MS demographics, you need to hear that you aren’t alone.

Making a lonely disease even more lonely

As I write this, I am 41 years old, I have had MS for close to two decades, I am single, unable to work, and have no children (though I very much treat my dogas my child). It can be argued that Multiple Sclerosis played a pretty big part in my current situation, but that’s not the discussion point here. Rather, I wish to discuss the difficulties that come with all of this. There are many times during which this combination of life statuses can weigh on me. In short, it can make a lonely disease seem even more lonely. It can also really make one feel like giving up and like there is nothing worth fighting for. I feel like I constantly have to manufacture extra motivation to keep on keeping on and to do the things I need to do to keep this disease at bay.

When The Weather Makes Life Rough

The summer can be a rough time for folks with MS. I know I’ve written extensively about how increased temperatures and humidity can have an adverse effect on those who suffer from the disease. We recently went through an intense period of hot temps and near 100% humidity where I live in the far southern tip of Delaware along the Atlantic Ocean (and yes, I live just miles from the beach, but seldom enjoy it in the summer because of the weather). During this stretch of time, I took some notes about how the weather affected me. I thought I’d share some of my observations. This may not be helpful for those who already have MS, but might be good examples to share with friends and family to explain what warmer weather can feel like, for at least one person who has MS.

The abrupt change in weather

On the first day of the warmer and more humid weather, my notes really focused and blamed the abrupt change in weather. It had gone from low-70s to mid 80s but also included a massive increase in humidity. The humidity increase seemed to come first, and while air conditioners are very helpful when the temps are high, they don’t usually kick in if the humidity is high but the temps haven’t increased. Regardless of what changed first, the fact that the change happened quickly, overnight, was a shock to my body, leaving me with increased fatigue and cog fog. I noted in that same entry that it was taking me longer than average to do things, basic things, like work the remote control and I can tell (lots of “colorful” language) that this left me feeling very frustrated.

MS & Fear of the Unknown

I was diagnosed with multiple sclerosis (MS) almost 9 years ago, and as many people will tell you, being diagnosed with a chronic disease can be rather scary. Even now, all this time later, and after all that I’ve been through, I can still remember a lot of the details of that day pretty clearly, including how I felt and what I was thinking. While everyone might give you a different reason for why being diagnosed with MS was scary to them, I would argue that a lot (but definitely not all) of the fear that comes with a diagnosis like this are probably all the same thing just hiding under different disguises. People naturally fear the unknown, and considering the fact that most people don’t know too much about MS when they receive the news that they have it, I would say it’s safe to assume that their diagnosis came with a lot of fear. In that one moment in time at the doctor’s office, there was so much that I realized I didn’t know, so many questions that I now had! My mind was instantly flooded with an ocean of unknowns.

Why are people afraid of the dark?

Most of us (whether we have a chronic illness or not) can all relate to this concept of “unknowns” causing fear through the simple fear of the dark, even if we only ever experienced it as a child. I mean, let’s be real here, the dark was scary, right? Why though, would anyone be afraid of the dark? The mere absence of light? Well, that’s a dumb question, everyone knows the answer to that! Monsters, of course! The dark is scary because that’s where monsters hide! “Calm down, there aren’t any monsters hiding in the dark,” an adult most likely assured you, but that didn’t really change anything, did it? Why not? Because you didn’t know for sure that there were no monsters. You still had no idea what was actually in the dark despite what the all-knowing adult was assuring you. Darkness is probably the best representation of “the unknown” that I could ever think of. People are afraid the dark because they don’t know what’s in it. People are afraid of the unknown.