When Being Sick Puts You in a Bad Mood for Years

Remember that time you had the flu? You said it was the worst week of your life. Your lymph glands were swollen and your back ached. You had chills and a fever. You were dizzy and puking. You couldn’t sleep but also couldn’t get out of bed. You had weird hallucinatory dreams. You felt like you were dying.

That feeling of death you had for six days — that was my life for six years.

I’m not exaggerating. Every day, for over 2,000 days (between June 2013 and May 2019), I felt like I had the worst flu of my life. My body wanted to stay in bed daily, but doing so didn’t make me feel rested — and it also didn’t make me feel better. And so I got up each day and tried to live some resemblance of a “normal” life.

What you might not know is that my “normal” was fairly limited. I dragged myself to an appointment or to an event for a couple hours each day. Then I rushed back home, exhausted and overwhelmed. I plunked myself down on the couch with an ice pack and heating pad. If it was a good day, I might be able to read or watch Netflix. On a bad day, my brain couldn’t even process simple information or entertainment. Even napping was difficult. So usually, I just curled up in a ball and cried, trying to figure out why this was happening to me. Most nights, I wondered if it might be better if I didn’t wake up to face another day of relentless pain and fatigue.

Throughout this time, I might have looked healthy and “normal” on the outside, but inside I felt comatose. I was a wispy shadow of my former self. However, I still wanted to live and thus had no other choice but to keep pushing through. And while I’d love to say I was noble and struggled like a saint, I did not.

Chronic illness kept me trapped inside a stiff, achy, immobile body with a brain that was foggy and confused. I couldn’t exercise for years. I couldn’t go out in public places because I felt overwhelmed by crowds, noise and pungent smells. My body was in a constant fight-or-flight mode and I couldn’t really experience pleasure. I couldn’t write, take classes or work. I lost my identity and my sense of purpose. I became isolated and tumbled into a dark depression.

I did not become a saint. I became an asshole. 

And so, I apologize for:

* A permanent scowl on my face.
* The loss of my sense of humor.
* Extreme sensitivity.
* An inability to follow simple directions.
* Yelling about the TV/radio/conversation being too loud.
* My seeming to have a lack of concern for anyone else’s needs.
* Being too tired to go out and have fun.
* Canceling plans at the last minute.
* Insisting people come to me because driving was too hard.
* My tears… so many tears.
* Pulling away and isolating myself even further.
* Resentment towards all the normal people taking their health for granted.
* Anxiety and fear that trickled down to others.
* An inability to be present.
* Seething anger and overreactions.
* Morphing into a strange zombie woman.
* No forthcoming apologies.
* Weird dietary needs.
* A screw-you attitude.

Like many people struggling with late-stage Lyme disease, I was in a bad and unreachable place for many years. We all think (thanks to Ali MacGraw and “Love Story“), that we will handle disease with grace and fight the good fight. But it’s hard to be a warrior when you struggle with an invisible illness that has no real treatment plan and you are told “it’s all in your head.”

In my experience, some people in the medical community still promote the idea that Lyme disease is “hard to get and easy to cure.” For those of us who spend years in a constant flu-like limbo, this offers us little support and even less hope. This illness destroys us from the inside out and sometimes destroys everything around us.

Stuck in our own fight, it’s hard to see that others around us are also struggling until it’s too late. Our loved ones can become collateral damage. And our guilt then adds to our struggle. Nobody wants to become a burden or cause others to struggle as well. We also can’t expect our caretakers to be perfect martyrs when we ourselves fail to be saints. In these situations, everybody tries their best to be strong for each other. Instead, maybe we need to show up as we are — flawed, vulnerable and human.

Could I have been a better patient?

I don’t know, probably. I do know that it’s hard for many people to deal with a flu that lasts six days. Nobody knows how they will handle years of debilitating sickness until they are faced with it. I prayed a lot at night for just “one good day.” But it turns out 12 good days out of 2,000 don’t offer a lot of respite or relief.

Could I have been a better patient if I had more support?

Yes, absolutely. I believe we need to encourage more compassion and empathy in our society so people with chronic illness don’t feel quite so isolated, alone and disconnected. We need to stop treating chronically ailing patients — especially women — like they are “crazy,” lazy or hysterical. I think if more people (including my doctors) had acknowledged my illness and asked me about my healing process, I might have been less cranky and defensive. Instead, I felt invisible, dismissed and ignored. I wasn’t just fighting a terrible disease, I was fighting to be seen and heard.

I also believe we need more support and compassion for caretakers.

Our caretakers bear the brunt of our despondent moods and see us wither and withdraw daily. They feel helpless, lacking control or a way to make the situation better. Meanwhile, they can’t complain. They can’t express their own needs. They never know day to day how we’ll be feeling or how much we can handle. As we become stuck, they become stuck. If our futures are in doubt, their futures are in doubt. Without a support system, they become disconnected and alone in this struggle. And they live in limbo beside us.

When I talk about support and compassion, I don’t mean serving up feel-good platitudes.

Patients and caretakers need friends/family who are willing to get down in the mud with them. This is messy, scary stuff and requires commitment and courage. We don’t want to hear from people who push fake positivity or require stoicism and smiles. When people tell us not to cry or don’t listen to us while we express grief, they make it harder for us to reach out in the future. In effect, they silence us. And this feels like shaming as well.

I learned to say I was fine most of the time because that’s all people seemed capable of hearing and handling. People always say they want to be helpful, but don’t know how to help. My suggestion: Ask.

Or just listen.

Despite being in constant pain for years, and becoming cranky and unmoored, I really did hold onto hope as best as I could. Each night, I found many things to be grateful for: my family, my home, my dogs, a friend’s text, my comfy bed, a cup of tea, dark chocolate, “Stranger Things,” my Kindle, knitting, access to medication, financial security and an unexpected good night’s sleep. But my gratitude did not miraculously cure me. It didn’t magically eradicate the bacteria in my body or repair my damaged immune system. And sadly, it also didn’t transform me into a pious saint or keep me from becoming an asshole.

The only thing I can do now is admit I was in the baddest of bad moods for years. Those were not my finest hours.

And I’m truly sorry.