What I Really Meant When I Said I Was in 'Remission'

Remission. It’s a tricky term when it comes to chronic illness. The night that I learned I was getting my peripherally inserted central catheter (PICC) line removed, I rushed to post the news on Facebook. Unsure of how to communicate it in a way that was most clear to others, I settled on “remission.” I wrote:

“Still have a ways to go, and the chronic illness battle will never be fully over, but… bye bye PICC and hello remission!!”

I was wrong. And I regret it.

I’d always been self-conscious of posting the raw truths of my illness. I’d opened up vulnerably a few times on Facebook throughout my fundraising campaign, and I felt that I simply couldn’t be “negative” anymore. So many people that followed along on my journey prayed for me, hoped for the best, remained optimistic that great progress would be made. There was no comment more common than, “Stay strong!” or, “You’ve got this!” And while all of this was (and continues to be) extremely heart-warming, in knowing that people cared about me and my health, it was also debilitating.

I had so many people hoping and praying for my improvement; how could I let them down? How could I admit to them the ugly truth that I could not even admit to myself? That my PICC line was coming out not because I was better, but because I was done getting better? That my crappy level of health was what I’d now have to settle on? That there wouldn’t be any more getting better?

I couldn’t. And so remission it was. The post, as always, was quick to yield lots of love, racking up hundreds of likes and dozens of comments, plenty of phone calls and text messages. Again, the love was marvelous. I received loads of new material to add to my “heartwarming messages” album, and I’ve looked back at it regularly over the course of the last two weeks. And so that night, I knew that I’d done the right thing. People were happy. Their prayers and hopes had worked. I had “stayed strong” and here I was, in remission!

And then the next morning came, and I felt like complete and utter shit. There was just one person to whom I could vent and cry freely – my good friend Becky, who struggles with a chronic illness as well and understood the reality of its permanence. But for everyone else, it was a day to celebrate, and celebrate I had to. After all, remission is such a positive word; how could I possibly be upset about my illness when I’m in remission?

Because for me, remission doesn’t exist. I am ill, and I always will be. What remission means is that the intensive treatment that I have been undergoing for the last year is now stopping because this is the best I’ll ever be feeling (ironic, being that I feel like shit anyway). Once there is no improvement for a minimum of three months in intensive treatment, it is assumed that no further improvement will be seen. And with that, you’re introduced to your “new normal.”

If anything, my “remission” day was more emotional than any other day throughout the journey. It was the day that I lost the ability to hope, because there was nothing left to hope for.

For the three years after I first got sick, I hoped for a diagnosis. Once I was diagnosed, I hoped for improvement, for a return to my former, healthier self. But once my PICC line was removed, once it was decided that it was time to switch from intensive treatment to maintenance treatment, there was nothing left to hope for.

Instead of hoping for improvement, I now had to adjust to an ugly reality that I didn’t want to face. Sick was my new normal. I would have to adjust my lifestyle to my physical limitations, and structure my life around illness. You can see why this would be a difficult concept to reconcile.

Don’t get me wrong. I’m better, I am. I no longer have headaches every single day. I’m able to sleep through the night. I go out and socialize, even if I’m feeling too exhausted to do so. I’ve lasted through full days of school – rare, but I have. I can sit and work for 30 minutes now instead of 15.

But for every area in which I’m better, I’m also at a place that is so drastically worse than that of a healthy person’s. I still suffer from headaches regularly. My sleeping through the night is due to medications, and still isn’t regular. My socializing is limited in ways others can’t even imagine. I can’t go anywhere – to a class, to meet with a friend, to a party, to an event, anywhere – without thinking, “What if I get sick while I’m there?” I can’t leave the house without three large packs of emergency and daily medications, packed in my bag.

I have a scar on my arm, reminding me, everyday, of the nine month hell that I went through. I go through days of being too nauseous to eat, and then days of being so hungry that I can’t stop eating. I never know when I’ll feel too weak or dizzy to stand, let alone to be in public. I swallow a total of over 25 pills a day, and will always have to. I get weekly blood tests to see if the life-saving poison (medicine) that I have to take has ruined my liver yet. And more than anything, I am exhausted. Always. There is never a time when I’m not tired, and I must go through each and every day as though I’m climbing a never-ending mountain. And it’s one freaking steep mountain.

This is dark, I know. I’m sorry if it’s too dark for you, and you can stop now. I won’t be offended. In fact, I should’ve warned you in the beginning that this wouldn’t be a happy post. But this is my reality. And for once, I think I deserve to allow myself to express it.

Now, don’t get me wrong. I’m not eternally miserable. It could be worse, and I realize that. I’m grateful for the amount of health that I do have. For the fact that I’m able to live a relatively normal life, that I’m able to exercise, to go to school, to spend a year in Israel, to live autonomously. But I’m also frustrated as hell, and I realize it’s time that I share the sadness, loneliness, and frustration that comes with chronic illness.

So that’s my remission. It’s an ugly one. There’s no PICC line, but I’m not healthy. You’ll see me posting happy photos on Facebook and Instagram, hiking and learning in Israel, studying and partying in college, but I’m not healthy. There will be good days, but I’m not healthy. Beneath the happy surface, beneath the celebratory Facebook posts and optimism that I attempt to project, there’s a hell of a lot of suffering and sadness. And that’s the reality.

Time to learn to live with it. Here’s to finding my “new normal.”

Follow this journey on Squeezing Out Lyme.

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