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A Call to Stop Stigmatizing Tracheostomy Tubes
I really loved Halsey’s latest column about how society paints tracheostomy tubes to be a bad thing, like your life should be pitied if you have one. Halsey pulled some great examples from media ads and used her own experiences to rebut these claims. It’s a really great piece. Tracheostomy tubes save people’s lives and shouldn’t be considered as anything less than. What are your thoughts?
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3 Replies
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A fear of mine, which could have come to fruition on more than one occasion, is needing a tracheostomy. I’ve even told Mom I want to do everything possible to avoid one. Despite knowing they can be lifesaving and you can live a fulfilled life with a tracheostomy tube, I’m still not sure it’s something I want. That’s why I’m glad Halsey wrote this article.
As she points out it’s a lifesaving medical device that many in the SMA community rely on. It shouldn’t be used as a scare tactic. Maybe that’s part of my hang up. When the time comes I might feel differently, but I know my body doesn’t react well to foreign objects. I hate having a feeding tube, so I can’t imagine how much I’d hate a trach. Despite that I feel conflicted because I know so many like Halsey who rock it. I’ve also seen instances where they bring nothing but trouble. I think it’s a personal decision but I think Halsey’s right. We need to stop stigmatizing it and shed light on the positive aspects of having a trach.
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So true. I understand what you’re saying, too. For some unexplainable reason, I have a fear of needing to get a G-tube and will try to avoid getting it at all costs. It sounds so silly (and irrational) to admit because I know a G-tube would help me and not hinder me. I know people who love having their tube. But then I see stories where people have issues or, like you, don’t enjoy having one and I think I’d be better off without until absolutely medically necessary. My doctors always encourage a G-tube at every appointment, but I’m just not there yet. While a G-tube is hidden, I believe the same stigmas still apply since it’s another lifesaving device.
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This column really hit home with me. I’ve had my g-tube and a SPC now for over 5 yrs, and I love both of them, even when they’re a little off. On the other hand, I just got my trach last January due to an emergency hospital stay. I didn’t get to make the decision, since I was in a drug-induced coma. My poor husband had to give the go-ahead b/c the doctor told him I would die if they didn’t do it. He debated, knowing I had said no, never when we had those previous “what-if” conversations. But it’s a whole different situation when death is on the table, staring you in the face!
It’s taken me 15 months to get over my own stigmas of having a trach. In that aspect, I’ve been glad I had a reason like Covid to stay in the house besides all my fears of what could go wrong. In the last couple of months, I’ve learned to go to the beach, go on a day-trip, and make my way around outside with the dog. People stare a bit more than before, or maybe I just was used to it. The down side is not being able to talk, b/c I’m not strong enough to put air through a speaking valve, and I’m on a vent 24/7. The amount of equipment I have to take going anywhere I go has tripled, and getting dressed takes a little longer in the morning too. But you know what? It beats the alternative – being DEAD!
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