Learning to Value My Life With Chronic Illness, Even When Society Doesn't

I don’t know about anyone else, but 2020 has gotten off to a bit rocky of a start. However, this is nothing new for me. It would seem that just about every January I am destined to get some sort of infection and then spiral into a flare. On top of that, it is cold, and my joints do not like the cold. But here in my area, we have had spring and winter in the same day sometimes, which has triggered my allergies and sinuses to take on a mind of their own.

Of course, what is new? My body does not like to do what I tell it to do; it is a rebel. It also defies medical standards every single day. But for some reason, some things seemed to be extra aggravating and just made me feel worse than I have felt in a while. For example, I am used to getting rashes and such from many of my conditions. But for some reason, I had several spots where my skin fell off. Yes, you read that correctly, my skin just fell off.

It was beyond painful, and I was highly self-conscious; I did not want folks looking at me funny because of my rashes and other abnormalities. I was also put on a super high dose of prednisone, and it seemed as though overnight I fluffed up and looked a mess. But one day I realized I could trade all of the side effects for a slimmer, trimmer and flawless figure, but I would not function. And being able to function is worth more than gold right now. For so long I did not have much ability to function, but finally, I was getting some parts of it back despite minor hiccups.

I have come to notice that being less able in an ableist world affects my self-esteem. You see, society assigns value to you based on how much you can do or what you are able to contribute. Sometimes chronic illness keeps me from working or being able to keep up with the fast-paced world out there. I am unable to hang out like I used to with friends, eat certain foods, stay up all night, travel and go on trips, or even do simple things like taking the stairs or spending the day shopping or walking long distances. As a result, I get left behind or isolated, and to be honest, it deals major blows to my self-esteem and makes me question just how valuable I am or if I am even noticed.

When I physically am unable to perform a task, have to cancel plans, refrain from eating or bring my own food because of my dietary restrictions, I experience a wealth of feelings. Sometimes I really don’t care; other times I get frustrated by having to explain how my life has evolved. And then there are some days where I clam up and don’t feel like being bothered because it is not worth the struggle of explaining things or convincing the world that yes, I have these restrictions, however, I am still a member of society and I am valuable.

We live in a very ableist world, and if you do not fit into certain categories, you are seen by many as a non-productive member of society. If someone is following a fad diet or begins a new workout routine, they tend to be celebrated and it is a positive topic of conversation. However, discussing the challenges associated with chronic illness or the adaptations we have had to make is often not viewed as a positive topic of conversation. Many see us as “Debbie Downers,” and that can lead to feelings of emptiness, loneliness and believing you simply do not belong. And all of that eventually begins to wear down one’s self-esteem.

Self-esteem isn’t just feeling good about your appearance, but also believing in your capabilities and worth overall. When you have watched your health steadily decline and you are unable to do things like you used to, it does affect your self-esteem, and even more so in this ableist world we live in. However, in 2020 I propose we knock down this notion that our worth is tied to what we are able to do. We are still human and we are still productive members of society. Just because our looks change, we move a bit slower and have had to make some changes to embrace this new life, that doesn’t mean we are counted out of this race. We still have a life to live and are valuable.

I have worked hard over the past four years or so to be OK with the changes to my physical self, which was harder than I ever imagined. On top of that, I have worked to grant myself grace to become even more body-positive, relinquish the guilt about my abilities and raise my self-esteem. I started saying this mantra to myself whenever I begin to slip backwards in my thinking:

“I am unique. I am perfectly OK just the way I am. I am better than no one; no one is better than me. I am grateful for today and all its opportunities. I am in touch with the truth about who I am. And most importantly, today, I will celebrate me!”

These words help keep me focused on the positive and remind me that I am great and beautiful and deserving of all the things that are due to me. So in 2020, I am jumping over the notion that my worth is tied to my abilities. Won’t you join me?