Living with Chronic Illness Is Emotionally Complicated

My relationship with myself has never been one of positivity. I have had a negative self-image as long as I could remember. I have always doubted my abilities. I have questioned whether or not I was worthy of even living. I have also grown to hate the shell of a body I live in thanks to several chronic illnesses I live with. If you want to catch up, you can read an introduction to my journey with chronic illness in another article I wrote, titled "Learning to Bloom in Adversity."

This article, however, is not going to be uplifting or positive or even inspirational, unlike "Learning to Bloom in Adversity." No, this article is going to get a bit complicated, as I attempt to venture into the grey areas of emotions while living with chronic illness. What's the purpose in writing really sad stuff? I'm not too sure. Awareness? Sure, let's go with that.

To begin, I recently watched a video that was uploaded to BuzzFeed's YouTube channel As/Is, titled "I Got Cancer at 25." It shows the story of Megan Boykoff, a video producer at BuzzFeed, and her journey with being diagnosed with colon cancer at just 25 years old. The video is so beautiful and moving, so you should just watch it for yourself rather than me try to summarize its contents.

During this video, I cried. After this video, I cried. There are so many things that I identified with in this video, even though I personally have never been diagnosed with cancer. At the end of the video, Boykoff reveals she is finally done with chemotherapy, and hopefully, done with cancer forever. That made me more emotional than I thought. I am so happy, elated, and immensely proud of her for completing her chemo journey.

However, there is a weird, grey area of emotions I felt toward her saying that last sentiment. A small tinge of this strange half-jealousy, if you will. Among the many different emotions she was feeling during her cancer and chemo journey that I identified with in my personal chronic illness journey, the statement of "hopefully being done forever" was not one of them. It'd be a dream if I could be done with my chronic illnesses forever. Sadly, that is not my reality. Of course, I don't wish I had cancer at all—nothing of the sort. I also don't want it to sound like I am in any way invalidating her journey; her experience is astoundingly valid. I am only observing the specific aspect that there's a chance I'd never have to deal with illness ever again; that's something I know I'll never have, at least, probably not within my lifetime. Who knows, maybe some scientists will find a cure for my illnesses, but I'm not getting my hopes up.

I know this is something that's been talked about and debated amongst others in the chronic illness community, whether publicly online or privately between each other. It's a complicated, difficult area to navigate. Do we need to be more grateful for our lives because "hey, at least it's not cancer?" Or should we empathize with cancer patients even though we may not have the same terminal outcome they may have? Do we even have the "jurisdiction," so to speak, to truly empathize with them if we ourselves don't have a terminal illness? Where is the line drawn? These are questions I'm not sure we as a chronic illness community will ever figure out with a universal answer. All I personally know is we all have struggles that we equally and validly deal with. All we can do is support each other through the tough times. To me, there is no point in trying to compare each other's lives with a "who has it worse" mentality; quite frankly, we all have it pretty bad in one way or another, it's just a different experience. Then, of course, there are those who have chronic illnesses and then they also get diagnosed with cancer. Or those who get chronic illnesses as a result of their cancer. Are you beginning to see what I mean when I say there is a complicated grey emotional area in regards to living with chronic illness? Maybe? Not yet? Let's continue.

There is a weird thing (weird if you're not familiar with it) that happens in the chronic illness community called "internal ableism." It's when we degrade ourselves for not being able-bodied, for not being "normal," or for not being able to perform certain tasks due to our illnesses. In another sense, it can be understood as seeing ourselves as inferior because of our illnesses. Internal ableism shows its ugly face in many forms, but mostly sneaks up on us with an overwhelming wave of guilt. We will tend to internalize ableism toward ourselves with intense feelings of guilt over simply being sick with illnesses we cannot control. We feel at fault for our family's financial problems. We feel like our "friends" have a right to ditch us when we flare up and can't go hangout with them; yeah, they didn't want to hangout with us anyway, they're better off hanging out with their friends who aren't "sick." These, of course, are all thoughts that are false and not true in the slightest. Internal ableism has a way of seeping into our thoughts and dehumanizing who we are at the expense of the perception of our own illnesses and our own selves. This becomes another complicated grey area of emotions when dealing with a chronic illness. What's the difference between pushing yourself to learn perseverance and resilience or pushing yourself beyond your limits to act "normal?" You'd think it's a simple answer, but it's not. I have been chronically ill for about eight years now, and I still struggle with internal ableism on a daily basis, often getting it confused with pushing myself because it's "good for me," or whatever else my brain wants to justify it as. Seeing how it feels like an endless, emotional fog yet? Kind of, but not really? Well, let's keep going!

Acceptance. This is what we all hope to achieve in life, in whatever capacity that means for you. Acceptance of a spouse's annoying habits. Acceptance of a family member's decision. Acceptance of your hairstylist telling you the color you want to dye your hair might look weird on you and not go well with your complexion so you should pick a different color (this actually happened to me years ago. I am so thankful I listened to her!). Whatever acceptance looks like to you, we all seek it. We all also seek to be accepted. Accepted by others, our peers, our families, our significant other's friends/family... even sometimes wanting to be accepted by our pets, making sure we know they love us. It's the feeling of validation that is addictive, especially within our society today. Acceptance. Validation. These are two things that are so hard to deal with if you're chronically disabled. Has anyone ever truly accepted their diagnosis? Seriously, please tell me if you have. I'm curious. I know I haven't. I'll have these times of perceived acceptance, where I live my life like I'm not sick and then end up paying for it later. Then I usually feel this overwhelming crash of emotions and re-realizations that I'm going to have this forever. It's rough. It's sad. It can also be weirdly motivating on some days. But for the most part, it just flat-out sucks. I think, for the majority of us, we've come to terms with the chronic aspect of our illnesses. I think that's very different than accepting the chronic aspect. To me, accepting something—truly accepting something—is to say that you are at peace with it. I know people who have come to be at peace about many things and I understand it takes a lot of strength... so what am I doing wrong? Am I not strong enough? See that internal ableism and self-doubt creeping in? The truth is, I'm my own version of "strong enough." I am strong. I just need to be reminded of that sometimes and know that it's perfectly okay to not be totally at peace with my illnesses. It's okay to have moments where I'm crippled by overwhelming thoughts of my reality in living with chronic illnesses. It's okay to have moments where I ignore it for a while. It's okay to have ups and downs in the emotional processes of daily living. It's okay. I can accept that. I hope by now, you have caught a glimpse at just a few of the many complicated feelings an individual with chronic illnesses goes through. It's tough stuff; it really is.

The beautiful thing about people telling their story is that, even though someone else may not have their exact same situation, there are always things that we can parse out and identify with. To me, that's one of the beautiful things about humanity. There are so many different things that connect us to one another, whether it's life experiences or something else entirely. We can connect on a deeper level by being vulnerable with our emotions, by being raw and honest about what we go through. To me, this is where true healing can begin. You have to be able to open up and be honest with your feelings, your experiences, and your story in order to identify how to move forward. Whatever you are dealing with, whether it's cancer, a chronic illness, a death in the family, work/school stressors, or you just ate some bad seafood, we're all going through something. It could be a huge grey sea of complicated emotions, or it could be a straightforward road of simple emotions. Moving forward will be bumpy, scary, and downright shitty at times, but you know what? You just gotta dig deep and keep ya head up.