Caring for my mother taught me to recognize my privilege

The first time I saw a patient all by himself in the infusion room, I didn’t notice him. No, that’s not what happened. On that particular day, I was busy going through my phone as I waited for my mother’s nurse to arrive.

But even as I was browsing my phone, I could hear it. It was unmistakable: the sound of someone crying quietly. But it wasn’t his soft cries that caught my attention. It was the sound of someone pushing a call button repeatedly.

I was forced to look up from my phone, and that was when I saw him. The man was probably in his early 70s. He was standing by the pay phone, gripping an IV pole in one hand and staring at a demand notice for more than $400.

From the way he looked at the pay phone, I could imagine what was going through his mind: Where was he going to raise that kind of money in a country where the minimum wage is around $45 per month?

Recommended Reading

August 26, 2025 by Steve Bryson, PhD

New gene therapy for multiple myeloma enters clinical trial

The privilege of being seen

At that moment, I was forced to confront an uncomfortable truth: My mother’s suffering was not the only story in that room.

Here was a man, all by himself, pondering what his next step would be. Perhaps he had to shoulder that responsibility alone. He was holding his IV pole himself. He was making calls himself. No one was there with him. Why? I wondered.

Unlike him, my mother had me as her caregiver. I was there to handle any issues for her. But him? He had no one.

Apart from me, there are others helping my mother navigate her ongoing struggles with myeloma. For instance, my mother’s oncologist knows her name and easily recalls her diagnosis and treatment plan without going through her records. Plus, we currently live about 25 minutes away from a specialized cancer clinic, and the pharmacy usually preapproves my mother’s medications simply because I have enough time to call them about it.

But what about this older man?

Right then, I was forced to understand and appreciate that all of these conveniences were privileges that I had mistaken for luck.

The myth of ‘equal’ care

Myeloma does not affect everyone in the same way, and the healthcare system does not treat everyone equally. This disparity shows up in some obvious ways:

• Financial toxicity: Remember the man with the $400 bill? He skipped his next appointment.
• Geography: A nurse once mentioned that a patient living in a rural area had to drive more than six hours for her infusions.
• Language barriers: Last week, a patient next to us nodded as the nurse reeled out discharge instructions, but it was obvious that the woman didn’t understand what she was being told.

How privilege shapes advocacy

I used to think that caregiving was just about showing love. Now I know it’s equally about helping our loved ones access care. I am privileged because:

• I can challenge doctors and medical specialists without being dismissed or labeled “difficult.”
• I can speak in “medical English.”
• I can take unpaid leave.

A call to acknowledge (without guilt)

Privilege is not a sin. However, being ignorant of the ways in which we’re privileged is unacceptable. These days, I am armed with greater insight, which is why I now try to:

1. Stay angry at systems, not at myself. I still battle with guilt and anger some days, but I remind myself that such negative feelings don’t help anyone.
2. Leverage my advantages. I’m always willing to translate medical jargon for others, especially in my weekly columns.
3. Spot the gaps. When my mother and I are awaiting our turn at a medical facility, I deliberately avoid scrolling through my phone. Instead, I try to spot others who might be struggling silently.

Note: Rare Cancer 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 Rare Cancer News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare cancer.