New Year, New Me, Same Illness

I intended to have this post ready to publish on January 1st but life happened.

And that's what this post is going to be about- that life happens.

That we can make New Year's resolutions all we want but ultimately, life will happen. Unpredictable hospitalizations, new treatment side effects, and flares will all try their best to get in the way of our goals. After all, the only predictable thing about life with a chronic illness is that it's unpredictable. With this in mind, it's very hard to plan day-to-day life, let alone new years resolutions.

When you have a chronic illness, the beginning of a new year might seem daunting instead of hopeful. You might even fear the prospects of a new year.

Some might see this new year as having endless opportunities, and honestly I do too. However, that's exactly what I'm afraid of. 2018 could bring on endless symptoms, diagnoses, hospitalizations, treatments, flares, and breakdowns. For a healthy person, they are more or less in control (or at least feel like they are) of their life. For someone with a chronic illness, we are very aware of our lack of control. We go to great lengths to try to control any aspect of our illness without much success.

My counselor has tried to challenge my tendency to catastrophize (to see the worst case scenario as the only possible scenario). Although I've been trying to do the same, this cognitive distortion was once adaptive (like most of them are at some point, hence why we develop them in the first place). When I was bedridden and my body was even more hypersensitive to any and all changes, I had to thoroughly and critically analyze whether a new treatment option was worth the possible (but likely) hospitalizations, withdrawal symptoms, and side effects. It's hard to see past the worst case scenarios when thinking about the future when you've experienced the worst case scenarios in the past.

You see, my tendency to catastrophize is not at all the same as pessimism. Pessimism is to see the worst in everything. Catastrophizing is to fear that the worst will happen. I see the best in my current situation because I have to. I have to believe that my pain isn't all for nothing. I have to believe that my life has purpose and is worth living. I have to believe that there is good in this world. Catastrophizing means that I fear the worst case scenario will be what happens, but optimism and hope mean that if it does happen, I'll still be okay.

I honestly don't think someone with a chronic illness would be able to survive this battle if they were plagued with pessimism.

Catastrophic thinking, for most able-bodied people my age, would look like the intense fear of changing jobs or schools because they think they'll end up homeless if they make a tiny wrong turn. They see success on one side and failure on the other and don't look at all the tiny possibilities in between. However, these people most likely have never experienced homelessness.

We, on the other hand, fear that we will experience what has already happened to us. We know the endless possibilities and they terrify us. We fear that we will become bedridden, again. We fear that we will experience medical malpractice if we go to the hospital, again.

So I voiced this, through tears, to my counselor. He was incredibly empathetic but convicting, which is exactly what I need.

"Your catastrophic thinking might have been adaptive at one point, but it isn't anymore."

It no longer serves me.

My catastrophic thinking doesn't prepare me for the future, it causes me to be paralyzed with fear. Paralyzed.

It's not going to prevent any symptoms, diagnoses, hospitalizations, treatments, flares, and breakdowns.

It's not going to prepare me for the future to fear it.

Now, how can we plan for 2018? I like to think to myself "where would I like to be in a year from now? What toxic ways of thinking or bad habits would I like to be free from? What's holding me back in my journey with chronic illness?" and focus my goals around that.

I've recently come across some articles by those who focus on one main word for each new year. It's interesting because I've been doing something similar for the past few years. In the beginning of 2016 an elder at my old church explained how God gave her a word each year to focus on and explained how it's been working for her. I was really hesitant but decided to try it myself.

In 2016 God gave me the word "courage." You might wonder how I knew it was courage- this might be especially confusing and odd for you if you're not familiar with how to hear from God in your daily life. Essentially, when I was praying I asked God and waited on Him. It probably wasn't until the 3rd time I prayed for this that I thought He was saying "courage." This was confirmed with every one of my devotionals at the time and I had complete peace that this was what God wanted me to focus on in 2016. The events in my life that year required tremendous courage. I can recognize looking back why God wanted me to focus on what His word says about courage and apply it to my life.

In 2017 God gave me the word "wisdom." I experienced a breakup and a breakdown that year that brought me to my current counselor who has gifted me with life-changing wisdom. Outside of my appointments I found myself constantly seeking more Godly wisdom as my life circumstances desperately depended on it. God had me clinging to Him as the ultimate source of wisdom and this guided me in every area of my life.

This year I was in Mexico with my family where we rang in the New Year. I had been praying the days prior about my word for 2018 and was telling my Dad how I have no idea what it could be. A couple days into the New Year I was convinced that it was "healing." You'd think this word would excite me and make me jump for joy, especially since in December God told me He was in the middle of healing me, and in 2014 God spoke through a friend saying that God was going to heal me but that it wasn't going to look like I expected. Healing, after all, is the ultimate goal of anyone with a chronic illness. However, I had made peace with the idea that God probably wouldn't heal me and that He was using my suffering to reach a hurting community. I had made peace with the idea that I would make progress but would most likely be sick forever. So I was more than a little bit surprised when God spoke this word into my heart and confirmed it throughout the beginning of January.

It could be mental, spiritual, or physical healing, I'm not sure.

It could be complete healing, or healing of 1 symptom, or just a year of focusing on things to help bring more healing into my life, I'm not sure.

The only thing I am sure of is that God spoke it and will follow through on His promises.

No matter what comes my way, the word healing helps me keep my goals in a very specific direction. You might think that as someone with a chronic illness I'm already constantly thinking about my health, and that's true, but I had completely given up on the idea of ever getting better again. I'm trying to pick up that hope and walk in that hope. In January I have gone completely vegan (I was in the past but gave up) because I know dairy isn't good for me and that I'm supposed to be thinking about healing not just management.

I highly recommend this way of making New Year's Resolutions because when faced with a dilemma your one word will pop into your head and you'll think "what would be the courageous thing to do?" (2016) or "what would be the wise thing to do?" (2017) or "what would bring me toward healing?" (2018).

It's a simple change in perspective that can be maintained no matter what comes your way.

If you don't believe in a God you can simply choose what word you'd like to focus on for 2018. You might already have an idea of what it should be! If you do decide to join me in this I'd love to hear from you in the comment section below.

I'd also love to pause and encourage you for a moment. Like I wrote about in the beginning of this post, a lot could go wrong in 2018. The concept of catastrophizing means that we only focus on one extreme of the spectrum, so let's focus on the other equally as likely extreme for a second.

What else could happen in 2018?

A cure, or a revolutionary treatment option might become available for one of our conditions. No, seriously! I have come across a lot of hopeful research on POTS, genetic editing, and CFS.

Think about that for a second. A cure. Or even just management of a couple more symptoms.

Doesn't that just make you SO giddy? It does for me.

What else could happen?

Maybe you fall in love, maybe you face a fear, maybe you have less symptoms, less flares, less hospitalizations, and less break downs. Really!

Or maybe, just maybe, you learn to love yourself a little bit more.

Anything could happen in 2018 but let's not let that terrify us. Let's let that inspire us. Inspire us to hold onto hope that no matter how your year started, we don't know how it'll turn out.

Either way, we're one year closer to a cure.

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