Being Negative About My Illness Doesn't Make Me Less of a Warrior

I’ve been struggling with writing a lot lately. Who am I kidding, I’ve been struggling with everything lately. I feel this need when I write and a lot of the time in person (basically anytime I’m talking to anyone outside of my family, my boyfriend and my best friend who is also chronically ill) to spin everything in a positive light. And I just haven’t been able to do that lately. Positivity is not something I feel. Things aren’t always “lookin’ up.” People need to realize that, and realize I’m not a bad person because I’m not always smiling as I take the next punch life has thrown at me.

Being chronically ill is like being in hell – a hell perfectly tailored to you, the most personalized hell you can imagine. You are literally trapped inside something spending the majority of its energy trying to destroy you, and that something is your own body. You have become your own worst enemy. And no one can see the pain inflicted; no one can hear you crying out for help. And because they don’t see, they don’t believe.

 

Your body has turned against itself and is now causing you indescribable pains you never thought a human being could endure. Nothing could be more real to you, more there, more consuming, more demanding and now you find no belief, no sympathy and no help. An insidious darkness, consuming more of you, body and soul, with each day that passes, with little noticeable outer change, so you not only experience the physical pain, but the psychological torment of constant doubt and disappointment as well…what could be more hellish than that? When I have burning pain I literally feel like I am burning in the fiery pits of hell and nobody has any idea.

I try to always end any conversation or any article I write positively, which is obviously not a bad thing, but it’s often not a realistic reflection of how I’m feeling (which shouldn’t be that shocking given my description of life with chronic illness above). It’s not, and I’m sorry if that’s disappointing! I try, I really do, but the positivity just hasn’t been authentic and heartfelt in a long time.

It’s hard, you know? It’s pretty darn hard to live like this. Life is hard enough without trying to exist in a body that’s set out to destroy itself.

For the first time in the six years I’ve been chronically ill, things may genuinely be improving for me treatment-wise and with figuring out exactly what diagnoses I have and stuff like that. But I’ve thought that before and have always ended up worse-off than I was. So forgive me for being a bit damaged and for being cynical. This cycle of thinking, OK we know what’s wrong and here’s what’s gonna treat it and I’m finally gonna get better, trying the treatment and getting no better has been repeated so many times I’ve basically been conditioned to the point I expect and fear failure immediately. I know this isn’t healthy, but it’s what happens to a person when there isn’t proper treatment available for them, and when they’ve been treated poorly (poorly isn’t a strong enough word) by the systems set up to “help” them.

And it’s not just me needing to work through past trauma (just work through the six years that have traumatized me to the point I have panic attacks and nightmares and flashbacks if I start to think about what’s happened to me!). Chronic illness is like Hydra, the monster from Greek mythology that would grow back multiple heads if you cut one off. No, really, the majority of the time that’s what happens. I might get one symptom or one disease under control, but the treatment that’s helping me can cause a whole slew of side effects (listen to the end of any drug commercial), or it can exacerbate other conditions I already have (treating my POTS affects my COPD and vice versa), or it can cause brand new problems (methotrexate, a chemotherapy drug often used to treat autoimmune diseases, can actually cause cancer, kidney disease, liver failure and pneumonia, and can lead to severe infections) – exciting, right?!

The fight is never-ending. Even if I were to get everything under control, “under control” is only temporary – it’s a bandage. The majority of chronic illnesses are chronic because they don’t have a cure. They’re often progressive and debilitating. “Under control” would mean my symptoms are being comfortably managed at this point in time so I can function in the world until the diseases progresses again and we have to start all over finding and adjusting treatments to get things back “under control.” It doesn’t mean I’m cured.

The fact that I spend every day feeling trapped in my body, knowing that no matter what I do I will never be cured, I will never win…it’s a bit of a downer, wouldn’t you say? So excuse me if I’m negative. Excuse me if I’m cynical. I think the fact that I make it out of bed most days and I’m still trying to get better and I’m still alive are indicative of the warrior within me. I don’t think being negative negates the fight I show every day.

I think that fight, if anything, should be the measure of my attitude and my courage. Because if we’re being honest, I could’ve given up years ago. I could’ve said “I’m done” and left this miserable body and this earth. But I didn’t. I still haven’t. It’s hard when people don’t understand that staying alive is literally a fight, physically because of the illness, and mentally. It’s hard when people expect constant positivity when they can’t or when they refuse to see the reality of my life. It’s hard when you can feel the disappointment each time you’re honest about what you’re going through, especially from the people who are supposed to care about you no matter how tough things get.

It’s just exhausting. I guess I’m just tired of not only fighting my way through hell every day to do the most basic of tasks, but of then also having to constantly contort my actual feelings and the details of my actual situation to coddle others so I don’t *gasp* seem negative!

I guess maybe it’s another one of those things I do as a defense mechanism, to keep people who don’t really care from getting too close by pretending things are actually fine. But things really aren’t fine. I’d like to say that at the end of the day, I look forward to a new day with hope. But most days that’s not true. And I’ve always said I want to try to provide a real picture of life with chronic illness.

Sometimes chronic illness isn’t “It’s OK, I’ll try again tomorrow,” it’s more “I’d rather tomorrow never come.” And sometimes it feels like that for weeks and months and years when you’re chronically ill. Sure, there are good, even beautiful moments sprinkled throughout that time, but all of those moments are also tainted by the ever-present illness. And sometimes I can ignore it but a lot of the time that makes me bitter. It makes every minute bittersweet.

So there are a lot of reasons why it’s difficult to be positive as someone who is chronically ill. And I’m not going to end by pretending like I feel more positive after writing this. That’s the whole point of this. Sure, I feel a sense of release, maybe? But positivity is not something I think can be forced or something I feel is quite as much of a necessity for healing as people seem to think for whatever reason. I think you can fight for your life each and every day and show immense bravery and courage while still not necessarily feeling positivity in your heart.

Positivity is a great thing, and I am in no way opposed to gaining more of it for myself or for using it as a tool for healing if that works for you, but I don’t feel as though I can force it upon myself or anyone else, and I don’t feel I’m any less of a warrior when I fall back into negativity, especially when dealing with something as monstrous as chronic illness.

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