I encourage patients to self-advocate, but then I couldn’t do it myself

I talk a lot about using my voice. As an advocate living with hereditary angioedema and multiple sclerosis, I believe in speaking up, asking questions, and making sure our experiences as patients are heard. But during a recent five-day hospitalization, I reached a point where I couldn’t.

The experience was traumatizing, to say the least. As much as I have written about advocacy and encouraged others to speak up, I didn’t have the strength to keep doing it myself. I didn’t have the fight in me. All I could do was cry.

That is a hard thing to share in a column called “Living Rare, Speaking Loud.” But it belongs here just as much as anything I’ve written about finding my voice. Because sometimes, living rare can mean needing someone else to speak loudly when you can’t.

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Others stepped in when I couldn’t

It’s one thing to talk about self-advocacy. It’s another to find the energy for it while you’re the person in the hospital bed.

I knew what I was supposed to do, and I tried. I asked questions, explained what I needed, and spoke up when something didn’t feel right. But my part of the advocacy lasted less than 24 hours before I broke. It took less than a day before I realized I simply didn’t have it in me to fight.

Knowing that you have a right to ask questions doesn’t magically give you the strength to keep asking them. Knowing the difference between right and wrong, and acceptable and unacceptable, doesn’t mean you’ll have the strength to challenge it. Having advocated before doesn’t make you immune to reaching a point where you simply cannot do any more.

During that admission, there was a painful distance between what I encourage others to do and what I could manage myself. I knew what I would tell another patient to do, but knowing what to do didn’t give me the strength to keep doing it.

I could cry, but I couldn’t turn those tears into the words I needed.

A patient who cannot explain what they need still deserves attention, respect, and care. Their inability to keep pushing should never make their needs less important.

Even advocates need advocates

A friend of mine has said to me on a few occasions, “Hollie needs a Hollie.” During those five days, those words took on a different meaning. I couldn’t keep asking questions, finding the words, or pushing when something didn’t feel right. I needed someone who could step into that space when I couldn’t.

I called my dad and asked him to please help me. I gave him a rough explanation of what was happening and what I needed him to try to do because even putting that much into words was difficult. He rose to the occasion in a way that made my heart incredibly full. He didn’t need to know everything about patient advocacy or have all the right words. He stepped in, asked questions, and spoke up when I no longer had the strength.

I needed that help, and I want to say that plainly without rushing to a part where I become strong again.

My friends helped carry me through those five days, too. Some were the “normies” in my life, while others live with chronic illness themselves and understood without needing much explanation.

There were flowers, food, and gifts, and I appreciated every bit of it. But some of what mattered most couldn’t be delivered to a hospital room. My friends kept checking on me. They let me cry, vent, be angry, and be scared. Most importantly, they listened.

They couldn’t fix what was happening, and I didn’t need them to. I just needed somewhere safe to put what I was feeling and someone willing to hear it.

There’s no shame in letting someone else speak up

I am still processing what happened during those five days. I don’t have to turn a traumatizing experience into a neat lesson before I’m ready.

I still believe deeply in using my voice and helping patients understand that their experiences matter. But now, when I talk about advocacy, I want to make more room for the person who already knows how to use their voice but, in that moment, simply cannot.

I was that person, and I didn’t leave the hospital having found my voice again. I didn’t leave feeling stronger because of what happened. I am still trying to process an experience that broke something in me while I was there.

What I did have were people who stepped into the space I couldn’t fill myself. My dad spoke when I couldn’t. My friends listened when I needed somewhere for everything I was feeling to go.

Maybe, for now, I don’t need to turn that into anything more than what it was.

I couldn’t speak for myself, and I am grateful there were people who didn’t require me to.

Note: Angioedema 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 Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.