IV Medication: Social Infusions
I used to hate needles, so after I was diagnosed with multiple sclerosis (MS) and was first told that I would need an infusion of steroids? Well, that was... intimidating. I mean, this was not just a quick shot in the butt, this was some kind of needle in my arm for an entire hour! Well, OK, turns out the needle doesn’t actually stay in your vein the whole time, but still! That first hour of intravenous (IV) steroids was a very long hour of me just watching tiny drops of medication drip down and slowly make their way into my arm. It was all so foreign to me considering the fact that I had lived a relatively healthy life up until then. But now? Now I was in a huge room full of people who were all also hooked up to a bag of prescription juice, only they all looked like there was nothing strange going on here. Like this was just another day and the plastic tube sticking out of their arm was the least concerning thing in the room. How could they be so relaxed?
Becoming more relaxed and social
Well, in time, as I required more and more infusions of steroids to help combat my many MS exacerbations, and as that one hour of medication slowly dripping into my arm seemed to pass faster and faster, I started to get it. No one looked alarmed because to them? This really was just another day! I realized that now that I had grown more comfortable with having an IV placed in my arm and less alarmed by it, I was becoming more interested in what was going on in the room around me and less interested in the bag of medicine hanging over my shoulder. I was becoming more relaxed, and so, as I spent more time observing the people around me, I started to become more open to conversation, to socializing.
Time dragged on and on
Around this time, I had switched to my first IV-administered disease-modifying therapy (DMT) which had me coming into the infusion center once every 4 weeks for around 2 hours. It took about 1 hour to infuse the medication and then, at first, I had to stick around for another hour for observation to make sure I didn't have some sort of delayed reaction to the medication. Initially, the idea of an adverse reaction was kind of scary and did a pretty good job of distracting me from my surroundings, but it wasn't long before the time I spent sitting there in the infusion center eventually began to slow down and just drag on and on. Once again, I was staring at the tediously slow drip-drip-dripping of clear liquid into my arm because I just wanted to go home already! I was so bored! So of course, when someone sitting next to me tried to strike up a conversation? I often found that I actually wanted to keep it going because what else was there to pass the time?
The regulars at the infusion center
The infusion center I was going to at the time was part of a large medical clinic so there were lots of people there for all sorts of reasons and many of them were clearly "regulars" to this space. When I first started talking to others in the room, I still couldn't help but see everyone there as "patients" who were there to treat their medical conditions. As I had realized before, all of this infusion stuff was just part of life to them, it was all just routine, and that's why they didn't seem intimidated by it all as I had been until recently. They were comfortable sitting with a tube in their arm because they had been doing this for years and unlike me, no one seemed terribly bored, they seemed very... social.
I wanted to be a part of it
They all knew each other's names, they knew the staff, everyone joked, laughed, smiled; they were friends, and I wanted to be part of it. Like when you start a new job, but you haven't yet become part of the “employee family”; you want to feel included. I was there enough that I was beginning to remember people's names and I had absorbed enough of the conversations around me that I sort of knew what was going on in their lives. Even as a mostly quiet observer in the corner of the room who didn’t talk much, I was becoming familiar with all the different personalities of both other patients and staff members. As the months passed by and I continued to just take it all in, I eventually realized, I hadn't been staring at my IV bag.
Not patients but people fighting battles
After a while, I had become one more regular to the clinic who knew everyone by name, participated in the many conversations in the room, joked with people, and kept up with what was happening in their lives. I no longer saw the infusion center as a room full of patients treating their medical conditions, but I now saw it as a room full of people who were all fighting some sort of battle. Not just a battle with their illness, but a battle with their circumstances. Maybe they had MS just like me, but maybe, in the middle of September, their air conditioner broke, and they didn't know how they were going to afford to fix it because they had just been laid off? Hearing about their lives really helps put things into perspective. I could now see that the infusion center was a room full of life and struggles. The infusion center had personalized so much of what had originally just seemed like "another room full of sick people" in the clinic.
Comfortable with the infusion stuff
A few years later my neurologist moved to a new location, and I followed him there which meant that I had to leave my infusion center. All the familiar faces and the life of the room I had become a part of would simply go on without me. It was kind of a sad moment in my life. It felt like when I was a kid who had spent years in the same elementary school but then had to move to a new city and start over in an entirely new school; I was leaving all my friends and teachers behind and once again would have to learn how to fit in with a new crowd as the new kid. Luckily finding my place didn’t take long at this new infusion center because I was already comfortable with all the medical-infusion stuff so all I had to do was interact with the people sitting around me.
A social gathering instead of a medical procedure
I currently only go in for an infusion about once every 6 months, but because I am there for so long, I have had more than enough time to establish myself as a member of “the regulars”. The last time I went in I didn’t even bring anything to do for my 5-hour stay because I knew I would be busy chatting. We talked about family, shared experiences that most the people in our lives can't relate to, offered relationship advice, watched a few movies, and even ordered a couple of pizzas! Sure, we were all getting infusions, but we turned it into more of a social gathering and less of a medical procedure which just makes the day so much easier.
Do you spend a lot of time getting infusions for your MS? Do you feel like the infusion center is a rather social environment? Do you try to participate in the life of this room, or do you mostly keep to yourself? Share below!
Does listening to music help lower the severity of your stress or MS symptoms?