Living with tubes connected to or coming out of your body is a very different kind of lifestyle. It can be frustrating, and scary, and at times a little gross. It can also be rewarding, and educational, and at times a blessing.

Living with tubes

For those of us with chronic illnesses that have left us needing these varies tubes to live with, whether permanent or temporary, it can sometimes feel like you have lost a battle. The fact that you now need to rely on this “tube” to survive can be disheartening, especially for young people.


Body image plays such a massive part in our mental health (for everyone, not just females!) and it’s hard enough to “love your body” as it is… But if you’ve just started down the “tube” life journey, you now need to learn to love it, with this tube attached to you.


At least these are some of the feelings I have had since the placement of my feeding tube. Surely I’m not alone?


Let me turn some things around and ask you to think of these things differently.


The battle is not lost, in fact, I would say I’m closer to winning now then I was pre-tube. How many of you now feel you are living a better quality of life thanks to whatever kind of tube you have now, whether it be a feeding tube or oxygen or PICC line or catheter?


If you’re living with a tube, I ask that you look back to before you got this assistive device (yes, that’s essentially what it is!) and remember how much you suffered, with pain, with nausea, with fear. For me, it feels like I am living a well-earned break; with my tube, I can live a better and stronger life.


Sure it takes a little longer to get ready to go in the morning, but overall, if you think about it, you realise how much better you are feeling because of your tubes. Mine was worth it for this reason alone, was yours?


Next, body image. It’s easy to feel self-conscious about anything that makes us look or feel different, but instead, I try to look at my tubes as the things that make us rock stars! Your body is strong enough to work in collaboration with this “thing” to keep you going, to make you stronger. How amazing is the human body?


Now these tubes aren’t always cute and fashionable, but how about jazzing them up a little and making them your own? You can buy tube pads, and bags, and decorations for all sorts of things now (here is just an example). Make it your own and have fun with it. That way, when you inevitably feel the cold stare of someone who is eyeing up your tube or device, you dare not to let yourself feel embarrassed or weird. Use it as a conversation starter, a chance to educate, or even just as a chance to learn to feel comfortable in your own skin, tubes and all.


Living this lifestyle is not always glamorous, and trust me it’s way easier to write about then do sometimes, but the most important thing is making peace with it. Make peace with the fact that you are not that same person you were before this tube, and you will not be that person again. Take time to mourn the loss of the version of yourself that you use to know. And when you’re ready, when you have said goodbye to the familiar you that is gone, welcome the new you with open arms, embrace your tubes, and eventually be thankful. You’re ready to set out on a new adventure of tube living with a new love of yourself and how an understanding of how strong you truly are.



 

Are you a “tubie”? Do you like that term? Let us know!

 

Would you like to share your story of living with hypermobility & it’s related co-morbidities (other diagnoses)? We would love to hear from you!

 

 

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First and most important, to me, I am a Nurse, and I love what I do! Secondly, I have Hypermobile Ehlers-Danlos Syndrome and GI Motility Disorder.

Coming to terms with a chronic illness is tough and life-altering for anyone. Writing helps me process and work through it all, and I hope I can spread the feeling to those reading my blogs that you are not alone in your journey!

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