What I Wish I Knew About Choosing Sedation

If there’s one thing I’ve learned living with a rare disease, it’s that being in the moment is deeply overrated. There are many moments in my disease journey that I would have preferred to sleep through. 

A chest tube being poked through my rib cage while I gasped for air? No thanks. 

An infected central line being removed while I thrashed against a metal table? Could have done without it. 

Stitches being removed from my eyeball? Well, surprisingly that one wasn’t that bad. Which is saying something, don’t you think? Personally, I think it’s saying I have adjusted to abnormal situations that should be featured in a haunted house rather than in my past medical records. 

When you grow up with a chronic illness, you live with the expectation that there are going to be procedures that you can’t escape if you want to live. You carefully weigh your need to improve your symptoms with your desire for a quality life. You worry, deeply, about whether or not refusing care under circumstances that make you uncomfortable will mean you get no care at all. You worry about being a problem patient.

I was born with a rare disease called primary immune deficiency disease, a condition that meant my immune system didn’t have the means to fight infections like other people could. I grew up facing one infection after another that wouldn’t resolve with antibiotics and for which I wouldn’t find a treatment until I was in my thirties. As a result, my body was faced with a variety of serious illnesses, wear and tear, and extreme diagnostic procedures that were as invasive as they were painful.

Being an advocate for my own care has been an evolving concept for me throughout my life. First, I thought I could only ask for permission to survive. Then I began to ask to both survive now and spare my body damage down the line. Asking for things like dignity or compassion seemed greedy, and making my mental health a priority didn’t come into the picture until I had already suffered the kind of medical trauma that had put me in therapy for years.

It took a lot to admit that I was just as susceptible to fear over medical procedures as anyone else might be. For instance, I avoided MRIs even in dire hospitalizations because I was claustrophobic. It wasn’t until I had to have one urgently and couldn’t force myself into the machine—even after taking a high dose of Xanax—that a nurse suggested, “Why don’t we just put you under for it?”

“Like under anesthesia? They do that for an MRI?,” I asked.

The nurse shrugged. “We do it for whatever needs to be done if we have to.”

So, we scheduled the procedure. A few days later, I was rolled into the MRI suite and met with the anesthesiologist.

“I’m so embarrassed,” I confessed to him as he set up his equipment. “I can usually handle this sort of thing, but I just couldn’t get through this one.”

“It’s nothing to be embarrassed about,” he told me. “You’re my fifth patient today, and I have four more who need to be put under for MRIs. You’re not the only person who can’t make it through this.”

I really thought I was the only person. People get MRIs every day. Anesthesia seemed excessive. I worried my insurance wouldn’t cover it. I worried my doctors would gaslight me about it. I hadn’t realized all I would have to do is ask for it and they would write for it.

In fact, there were many procedures I’d been holding my breath through that I could advocate for sedation with. Everything from dental work to spinal taps can be done safely with sedation. 

Sedation is a spectrum. There are four levels of sedation: mild/minimal sedation, moderate sedation, deep sedation, and general anesthesia. The different levels mean you can range anywhere from being able to respond normally to verbal commands to being unconscious while under sedation. The level you receive is dependent on things like the type of procedure you’re having, how your body responds to anesthesia, and how old you are. Healthcare providers administer the sedation in a number of ways, including as gas through a mask or liquid through an intravenous line.

If you’re considering sedation for a procedure that puts you on edge, consider asking the following:

• Is it safe for me to be sedated during this procedure?
• Will it impact the outcome of the procedure or any diagnostic results we’re hoping to achieve?
• What kind of sedation would work best for this procedure?
• What will my recovery from this procedure be like with sedation vs without sedation?

Not every moment is meant to be suffered through. Choosing sedation isn’t choosing the easy way out. It isn’t a weakness, and it doesn’t mean you’re not brave. Choosing sedation means choosing to be compassionate with yourself during an unavoidable situation. It means you’re choosing to get to the other side, no matter what it takes.