4 unspoken rules of etiquette to keep in mind at the infusion center

What a columnist has learned from her biweekly Soliris infusions

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by Erin Fortin |

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When I was diagnosed with a rare blood disorder, paroxysmal nocturnal hemoglobinuria (PNH), in 2019, I began receiving treatment with Soliris (eculizumab) at an infusion center. I was given the option of at-home infusions but decided against it.

At the time, I was battling needle phobia and still accepting my new infusion-dependent lifestyle. I wanted my home to be my safe space that was doctor– and needle-free. I was also nervous about my cats, Ollie, Ronnie, and Buggy, playing with my IV wires!

My first time going to the infusion center was intimidating and scary. It was set up like a big waiting room with reclining chairs around the perimeter. I was a little surprised that there was no privacy between chairs. I think I was expecting curtains or something to block the view of other patients.

Because my infusions are biweekly, it didn’t take long for me to recognize the faces of other patients who were there at the same time as me. Everyone had their favorite seats and gave me a friendly smile if we ended up making eye contact. But I quickly learned that there was an unspoken etiquette at the infusion center.

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A graphic illustrating a woman rolling a stone up a mountain on the left side, then celebrating it reaching the top on the right side.

Answering one of the biggest questions after my PNH diagnosis

Rule No. 1

The first rule of etiquette is reading people’s body language. Some patients love to interact and talk with one another, while others like to put on headphones and not speak. I’m in the middle — sometimes I like meeting new patients and connecting about our experiences, but if I’m listening to a good podcast, I’ll put my headphones on.

Rule No. 2

The second rule of etiquette I learned is to control the volume of my voice and electronic devices. Considering that people don’t normally choose to spend their time at an infusion center, it’s frustrating when others are loud when I’m trying to relax. I’ve heard patients and their caregivers chitchat so loudly that I needed my headphones at full volume to drown out the noise. I’ve also heard entire episodes of “Law & Order” coming from another patient’s laptop. Knowing what it’s like when others are loud taught me to be mindful of my own volume.

Rule No. 3

The third rule of etiquette is support. I’ve had beautiful interactions with other patients in which I’ve received and given support. One time, my nurse had trouble getting my IV in and I began to cry with fear. Another patient, an older man, was so sweet, offering me encouraging words and telling me not to cry because I was too beautiful to do so! He brought such a smile to my face and helped me more than he knew.

Another time, I was drawing Halloween stickers on my iPad when my nurse happened to walk by. She was so confused as to why I was drawing Michael Myers from the movie “Halloween” in the middle of summer, which gave us a good laugh! Another patient overheard and told me how much her grandchildren loved Michael Myers. I got my stickers made and kept a handful of them in my bag until I saw her a few months later and was able to give them to her. The woman had the biggest smile of joy and later told me how much her grandchildren loved the stickers.

Rule No. 4

The last rule of etiquette I learned was to remember that not all patients are there for the same condition or treatment. My infusion center offers multiple procedures. I’ve seen chemotherapies, iron infusions, phlebotomies, and much more. There are patients of different genders, ages, and ethnicities. Patients who are scared, and others who appear to be unfazed. So I avoided making assumptions about others and their medical journeys.

I learned the helpful trick of shaving my arm before infusions to avoid the pain of the medical tape pulling on my arm hair. I was talking to my nurse about this trick, and she mentioned that she has to be careful whom she discusses it because chemo patients lose their hair. Although it’s meant to be helpful, the recommendation could be triggering for some patients to hear.

This conversation really opened my eyes to the fact that I needed to be more careful with my words at the infusion center.

Interactions with other patients and even my nurses have made me confident that going to an infusion center rather than receiving treatment at home was a good decision for me. I enjoy the company of others, small talk to help pass the time, and the smiles of encouragement I receive. A place that used to intimidate me has become my second home, even if it wasn’t by choice. It’s a home with no household chores, where I can relax and take a break from my day.

Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.