Just ask!
By Rebekah Devlin
FOR 27-YEAR-OLD TAYARRA, IT’S THE STRANGE LOOKS, THE POINTING AND HURTFUL REMARKS, OR THE BLATANT WAY SHE’S IGNORED, THAT HURTS THE MOST.
Tayarra has one simple request of people… “just ask”.
If you want to know what that tube is, or how it works, or why she has it… just ask.
She’d rather that, than people make assumptions, or worse, treat her like she’s invisible.
She’s always happy to answer questions and raise awareness about why someone can have a feeding tube and what life is like with it.
Tayarra started her feeding tube journey when she was 24. She lived with severe gastroparesis, neuromyelitis optica and multiple sclerosis. Specialists exhausted every option before eventually putting in her feeding tube.
Tayarra wants people to know that doctors don’t put in feeding tubes just for the fun of it. If she didn’t have her tube, she would be in intensive care with a much more severe form of refeeding syndrome.
She is thankful for the tube saving her life, but often gets frustrated with the lack of understanding from others. People stare, make remarks, some point, whilst others ignore. It’s prompted her to become an advocate for people with feeding tubes. Recalling the moment her doctor said she needed a feeding tube, Tayarra admits it was a lot to process. But she worked through it and has this advice for those facing the prospect of a feeding tube.
“It will change your life, but for the better,” she says.
“There will be a lot of adjustments, but you’ll get the hang of it.
“A feeding tube can be uncomfortable and even painful sometimes. You’ll need to adjust your sleeping position and make extra time to clean and maintain your tube and to handle any complications.
“When you can’t eat the same way as everyone else, it can change your social life and make you feel left out. You may feel self-conscious about your tube and it’s okay to feel like that.’ But she also has a superpower too!
One advantage of having a feeding tube is that she can eat while she sleeps. Now that’s multitasking!
You can follow Tayarra’s story on Facebook and on Instagram @tayarrasmith