Cystic Fibrosis and Herpes Are Not the Same Thing

Cystic Fibrosis and Herpes Are Not the Same Thing
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I don’t have herpes.

I need to clarify this. I don’t have herpes, or Hep C, or cancer, even though many seem to think I do. Although I empathize with the Herps and Hep sufferers of the world, I am going to lose my mind if another person comments on health-related posts to suggest magician-doctor-cults or modified-herb-mojos to cure me.

“Have you tried celery juice?”

This was the direct message I received today in response to an Instagram story reporting my latest pain attack by my pancreas and liver. I shared this information because I figured the complete lack of dancing footage would make the sudden lifestyle shift obvious sooner or later.

I didn’t reply because I don’t want to be mean. Maybe they’re genuinely convinced that celery juice will fix a critically defunct digestive system, and I’d be better by now if only I’d known.

(Courtesy of Bailey Anne Vincent)

I am a big fan of proactive methodologies. I love working with a physical therapist, because it makes me feel like I can do something to help myself feel better. I adore garnering tips and tricks from my CF dietitian, researching healthier ways of living, and holistic-ing my way through life.

I do not believe that Big Pharma has the answer for everything, or that we should wipe our hands of responsibility for how our lifestyles affect various chronic calamities. But I do think that if celery juice cured everything, we would all be cured by now.

“I can cure your lupus, herpes, cancer, and more,” someone says at least once a week. They recommend a doctor whom they “must testify” about, and tell me it’s as simple as a certain supplement or saffron. I am here to tell you it’s not.

However, I do think the power of the mind is extraordinary. Sometimes I feel like I placebo my way right out of bed, or positive-think myself through things that maybe should be harder than they are, and that’s important to mention. Perhaps the first step to functioning OK despite not-so-OK circumstances is to not focus on what’s not OK.

I don’t think about all the reasons I shouldn’t be dancing or that my body shouldn’t move a certain way — I just move it.

And there needs to be more of that in the world. Sometimes I’ll notice someone say, “Oh, I can’t do this or that because I had surgery in 2004,” or, “Someone once said I have a tendency to pull that muscle,” or, “The Wikipedia of my disease says I may only live until 2025.” I disconnect from their deep connection to what medical wisdom says they should be, because I don’t always think it should be that way.

Perhaps I should. I don’t want to look down on another person for listening to their body, or judge someone for what feels right for them. We should all do what feels right for us, even if it’s considered wrong by someone else.

Psychological trickery has worked for me, and I can’t deny it. I have benefited from not focusing on my “can’t do’s” more than my “to do’s” — that’s just a fact. So, who am I to say that a profound insistence on celery juice doesn’t also work?

(Courtesy of Bailey Anne Vincent)

Our past dictates our present. I can’t eat tons of celery, for example, because my colon and large intestine no longer exist, and no amount of mojo-magic will change that. I grow frustrated with conflicting advice from my own healthcare professionals — one doctor recommends a fiber supplement while another insists on avoiding it — so I try to listen mostly to those at my CF clinic, my questionable common sense, and my vague instincts about my own system. If someone suggests something I know hasn’t worked in the past, I’ll take it with a polite grain of CFTR-mutated salt.

But being told I can be cured by a single vegetable or by Instagram idolatry gets old.

Stop giving medical advice to strangers on the internet. Stop telling people with entire teams of doctors and practitioners that a smoothie of root vegetables will fix everything. Stop equating cancer and herpes as the same thing. If you can’t read well enough to ascertain what someone’s disease process actually is, we should not be taking your advice to begin with.

I shouldn’t spend my time getting mad at faceless trolls and brainless web bots, I know this. Yet, I do, because we already get enough advice on a daily basis. We already fight our instincts frequently to move forward, and we don’t need more Insta-idiograms to ignore just to survive the day.

I wish this was as easy as juice.

It isn’t.

So stop asking.

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Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.

Bailey is a Deaf 34-year-old with atypical cystic fibrosis. She has been a journalist, columnist, and novelist for almost two decades, but is also an altruist, feminist and narcissist who likes to ask for “fatty sushi” that’s not on the menu (it’s cream cheese, egg and avocado, respectively). She is artistic director of the body-positive dance company Company 360 in Virginia, as well as a professional dancer, choreographer, and homeschooling mother of two girls. As a formally misdiagnosed mutant, she hopes to raise awareness of atypical CFTR disease and help anyone who isn’t genetically in the black or white feel less alone. For more on her activism or art, please see www.catchingbreaths.org.
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Bailey is a Deaf 34-year-old with atypical cystic fibrosis. She has been a journalist, columnist, and novelist for almost two decades, but is also an altruist, feminist and narcissist who likes to ask for “fatty sushi” that’s not on the menu (it’s cream cheese, egg and avocado, respectively). She is artistic director of the body-positive dance company Company 360 in Virginia, as well as a professional dancer, choreographer, and homeschooling mother of two girls. As a formally misdiagnosed mutant, she hopes to raise awareness of atypical CFTR disease and help anyone who isn’t genetically in the black or white feel less alone. For more on her activism or art, please see www.catchingbreaths.org.

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