a nurse stands over and wags a finger at a patient at an infusion center

My Nurse Stole My Dignity

I've lost a lot in my 23-plus years of living with Multiple Sclerosis. My career, numerous partners and relationships, my ability to run (and sometimes even to walk), and travel as I once did. Well, I could go on and on, but you get the point: I’ve lost a lot over the years. MS is a master thief that steals from you when you least expect it.

It’s not always the disease that is the culprit, though. Sometimes the people we are forced to rely on are the ones that poach the most valuable parts of our life.

An incident that must be shared

Like many people with MS, I receive my treatment via a monthly IV infusion. I get this done at a hospital just down the street from me. Not long ago, on an unseasonably warm day, I required a wheelchair to get to the infusion room, something I rarely need. As I’ve written about in the past, my speech was also a bit slurred that day. These are not uncommon occurrences for me, particularly when the temperature jumps the way it did that day.

As is always the case, before the infusion there is a questionnaire the nurse asks me. One of the questions is about having new or worsening symptoms. I answered no; this is common for me. A friend that was with me also agreed with me and said what I was experiencing that day was probably due to stress and the heat.

The nurse decided to deny my infusion, despite this questionnaire requiring my answers, because she’d never seen me use a wheelchair or noticed me slur my speech before. Someone who, at most, I see once a month (much less than that) believed she knew my illness and my body better than me (and a close friend I had there that day). Despite pleading and even having her try to get a hold of my doctor, I was denied and left without my infusion.

Stolen dignity

Aside from the major factor of not getting my critical treatment (and as someone who watched a grandfather suffer the worst this disease has to offer with no treatment, this was incredibly frightening), I felt like I had all of my dignity taken from me.

After 23-plus years, do I not know my own body and what is new and worsening? I literally offered to bring up MultipleSclerosis.net to show her my writing (one thing she held against me was my slurred speech, and I kid you not, that latest speech article of mine came out literally as this was happening).

I’m sure she would argue (and has) that she was trying to look out for my safety, which only makes it feel more like a slap in the face. A person with clearly no knowledge about my illness or me suddenly held my life in her hands and denied me critical care.

Demoralizing

The entire incident has devastated me. While I eventually got my infusion, I now feel so inconsequential. If there is one thing I am an expert on, is it not my body and my illness? To live with this disease every day, to put up with the losses, and the falls, and the burning pain every single day, and then to basically be told I don’t know what I’m talking about has really had an impact on my life.

I know this was probably just one nurse, but if it happened once, it can happen again. It could also happen to any of you. I’ve lost a lot in my life with MS, but this incident was the first time I felt that I lost my dignity. The first time where I felt like I didn’t matter. That all my pain and suffering was essentially worthless.

I tell this story not for sympathy, but because this kind of thing happens to a lot of people. We need to make the world aware of incidents like this. We need people to understand that just because we are patients, that doesn’t mean we don’t know what we are talking about.

Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!

Devin

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