It’s okay to not be okay

During this most recent hospital stay, I shared quite a bit (on Instagram) about the daily hospital grind. The constant parade of people coming in and out of my room, blood draws, x-rays and CT scans, the incessant beeping of IV pumps, talks with med students, and more. I hope that those who watched those updates learned something new or saw something they could relate to. It was fun for me to share that with you guys!

But something happened that I didn’t talk about, and I think it’s important to share it now that I’ve had some time to process it all. CF is weird (to say the least). Sometimes it looks like strength, positivity, perseverance, and hope.

And other times it looks like crippling anxiety, fear, frustration and pain.

The picture was taken after having my picc line placed on the day I was admitted. I had spent the better part of an hour panicking, silently crying, reliving the trauma of past experiences, and feeling as if I might die (even though I knew that was unreasonable, nothing about anxiety is reasonable).

I’m generally sedated enough that I’m blissfully unaware of what is happening. But this time, I was painfully aware of every little thing — every word being spoken, every sound, every sensation — and it sent me into a total tailspin. I found myself completely unable to speak, to voice my discomfort, to call out to the nurse to ask for more sedation. So I laid there, crying, feeling helpless, and having the worst anxiety attack of my life for a full 40 minutes.

If I’m being totally honest, this isn’t the first time something like this has happened. I first started to notice my anxiety a few years ago. At the time it was totally manageable, and it made a lot of sense to me. When you’ve spent as much time in a hospital as I have, you definitely encounter some scary and anxiety-inducing things.

I’ve been poked and prodded at since I was a baby. I remember, as a very young child, being pinned down by multiple nurses and my own mother as a sputum culture was collected. I remember screaming through nearly 10 attempts to place an IV before sinus surgery when I was six. I remember sitting on my dad’s lap around the age of 8 or 9, as he firmly held my crossed arms by my wrists, so I couldn’t move while I was getting a shot. I remember my first ever picc line being placed (after two failed attempts) while I was in the medical ICU, horribly sick, completely alone, and absolutely terrified. I remember the time a nerve bundle was hit during a picc line placement and my entire arm felt like it was on fire (a pain I still describe as being worse than childbirth). I could go on and on, really.

It’s no wonder that I have some anxiety, and even PTSD to some extent, because of these experiences. It’s hard to describe the feeling of utter powerlessness you feel when you’ve been subjected to these kinds of things your entire life. To surrender your body to strangers (well qualified strangers, but strangers none the less) and relinquish all control as they perform various procedures on you. It’s not something you ever get used to.

Over the last few years, I’ve been able to identify a potential trigger and utilize various coping skills in order to get through some of my anxiety. This has worked pretty well, and I’ve worked through a lot simply by being mindful. But then, in April, following my sinus surgery, I had a massive anxiety attack in the car on the way home. I didn’t see it coming. I wasn’t prepared for it. And it was brutal.

This most recent experience was similar in that it was totally unexpected. I was experiencing my baseline picc anxiety, but was able to ground myself and breathe through a lot of it. Then, once I was on the table and that first dose of sedation wore off, it suddenly hit like a ton of bricks to the face.

I was wheeled into the hall after the procedure and about 10 minutes later, a nurse brought Randy back to see me. He immediately ran to my side, grabbed my hand, and I cried harder. Once I got up to my room, still visibly shaken, I told my nurse a little bit about what happened. She encouraged me to talk to my CF team about it.

I had never admitted to anyone (including myself) how bad things had gotten; that I wasn’t able to control or even predict these anxiety attacks anymore. I hadn’t dared to say that I needed help. But once I started talking about it, an incredible thing happened — everyone rallied around me, they were incredibly supportive, and we started talking about ways to make this better. I realized that talking about my experiences was incredibly cathartic. I cried, I was able to talk about some of those terrible experiences without feeling the fear and anxiety that are usually associated with them, and it felt so good.

I’m an enthusiastic advocate for mental health. I preach about it all the time, yet I had a hard time identifying and admitting the issues I was having. And I believe that’s the case for many of us. Individuals with chronic disease and their caregivers experience higher rates of depression and anxiety,  yet it’s something that we don’t openly talk about (at least not as openly as we should). When the physical aspects of this disease are so unforgiving, it makes sense that our mental state is affected as well. So let’s talk about it!

I don’t know when my next anxiety attack will hit. I’m now experiencing anxiety about my anxiety, wondering when I’m going to lose control again, and I no longer trust myself to “get through it” like I was previously able to. But I know that I have a team of people on my side, we have a plan, and I’m not in this alone. Talking about it opened the door to healing, and for that I am incredibly grateful.

I like the parts of me that are hopeful, strong, and confident that I’ll kick this disease’s ass. But those terrified, anxious, and out of control parts of me are just as essential to my being. They’re part of who I am. Learning to accept that might be easier said than done, but I’m making an effort.

It is 100% okay to not be okay all the time, and admitting that has made me feel more okay than I have in a very long time.