Media is a big deal. Right? We all tend to watch and listen to it – even if we don’t like it, or don’t necessarily believe it. Awareness is a big deal too. And for those of us attempting to spread accurate information far and wide about our misunderstood and stigmatized disorders – the media can be an especially helpful tool for doing so. However, I can tell you from experience that sometimes you really have to put yourself out there for the sake of the cause… for the end game… and it’s not always easy to do that. The anxiety struggle is real. Very real…
Out of nowhere, I received an email from Nicolas Fernandes with Caters News Agency, asking me if I would be willing to do an interview with him regarding my experiences living with Cyclic Vomiting Syndrome. When I asked him how and why he chose me, he responded that he saw my blog, and thought I would be interested. After a quick search confirming legitimacy of the inquirer, I gladly accepted the unique opportunity to share my story with “the world”. After all – we need all the awareness we can get, right? And this is a golden opportunity!
After accepting, I immediately became nervous and full of anxiety about the whole thing… What will I say? How will I accurately and fairly represent myself and the CVS community? How do I decide upon which topics to focus? How will it be received by those with CVS and by those who’ve never heard of it? Will it be helpful? What if what I say is misinterpreted? What if I’m misquoted? How do a bring the best message I can bring?
With those thoughts racing around inside my head, I prepared by writing down what I would say. I created a speech for a 3 minute video and I repeatedly recorded it until I was happy with it. I spent about 2 hours trying to make that 3 minute video, 1 hour on the phone answering Nick’s questions, and about an hour gathering pictures. I wanted it to be perfect, but was also well aware that the end result would largely be out of my hands. I then determined to let it all go, and relinquish the final result as something beyond my control. I simply hoped for the best.
And then it was published… And uhhggg…. I didn’t really like it. 😦
I was told the focus of the article would be how I’m improving my chronic illness through a well-rounded, holistic, and natural approach to medicine – as opposed to a traditional approach to western medicine. But after reading it for the first time, I was concerned that the message sent wasn’t the one I was trying to send… My immediate thoughts went something like this:
- Holy crap, the title is a mile long!
- It sounds fantastical.
- I’m not cured! Cured?? What??
- Oh no, this looks like “click bait”!
- Ummmm, that’s not what I said…
- …or how I said it…
- That’s not what I meant…
- My God, what have I done….???
My main concern is that the article misleads others to believe that changing to a healthy diet without doing anything else can lead to a “cure” for CVS. In reality, the improvements I’ve experienced are a result of many things I’m doing, and I perceive all of those things to be equally important (for me). My treatment includes a well-rounded holistic approach involving several modalities – including plant-based diet, hiking, yoga, meditation, running, natural supplementation, and use of essential oils. That’s not to say I think that list is complete or 100% accurate, but it’s what’s been working for ME.
You see, the first thing you need to know about CVS is that it’s complicated and multi-factorial. Meaning, it manifests differently in each of us according to our unique set of problems, and we are all helped by different things. Confusing? Yeah… to say the least. Hence, why no one can figure us out. Imagine being in our shoes… And when all the test results would indicate us to be “normal”, we inevitably are forced to cope with the accusations of exaggeration and malingering by the only source of help we have available to us. Those accusations (of me) were wildly incorrect. Which brings me to stigma….
They mentioned the stigmatizing experiences I was previously subjected to, but I thought the way the article was written made me sound like a “victim”, rather than a strong and independent warrior who has successfully taken her health into her own hands. Whine-ing is something I have avoided doing within my CVS journey, and it sounded whine-y to me. Perhaps I was reading too much into it, but honestly I was disappointed, and a little bit embarrassed.
But then I read it again… and for some reason it didn’t seem quite so bad the second time… Perhaps because I really wanted it not to seem so bad…. So, I read it again – but this time I pretended I was someone who doesn’t know me and has no idea what my goals were for the article… and that’s when I realized something very important: No matter what I wanted it to say, the article contains vital information about how to treat CVS in a natural way. In that moment, I realized how to overcome my anxiety about the whole thing and focus on the important thing…. which is AWARENESS!! I focused instead on how this article will suggest a method of treatment perhaps not previously considered by others which could help them… and that even though the method presented within the article isn’t an exactly accurate representation of what I’ve been doing – it doesn’t matter because they don’t necessarily need to do all the things I do anyway. The article will simply lead them in the right direction to research and learn about treatment of CVS through natural medicine, and they can experiment to see what works for them!
It was also an important reminder for me that anxiety is IN-appropriate. That’s why it’s a disorder. The most important thing was always to share information to the best of my ability, bring awareness of CVS to others, and hopefully help some folks along the way. When I brought my focus there, I was able to overcome the anxiety I was feeling.
It’s impossible for me to know how many total people this article might eventually help… But, I can tell you that since the article’s publication, I’ve had a handful of folks reach out to me – either for more information, or to tell me they were either helped or encouraged in some way through reading it. The traditional saying is: If it helps only one person, it’s worth it. I agree whole-heartedly. Knowing that anyone at all has improved the symptoms of CVS through information I provided is a powerful motivator indeed. I remember when I was the one searching for the same information… it was worth everything to me when I found/realized it. Because that information is what has given me the opportunity to live a quality life with a chronic illness.
In fact, I’m happy to report that I’m currently living a FANTASTIC life, and have broken my record length of 6 months between episodes, as of June 1st, 2018!! I’m going for the gold now… I’ve set my sights on making it one entire year without a CVS episode. I know I can, and I hope I will.
This article obviously isn’t my first attempt at bringing awareness to my circles about Cyclic Vomiting Syndrome… I’m a member of several Facebook groups, I created my own CVS Warrior Facebook page, I created this blog… I’ve previously been very active and shared my story in Cyclic Vomiting Syndrome Association (CVSA) message boards. My story has been published in a book about CVS which you can search (Rare But Not Alone) and buy on Amazon. I’ve designed t-shirts and created fundraisers selling them for CVSA, hosted a Run For the Bucket 5K to fund raise for CVSA in my tiny home town (I was the only runner), and I’ve shared my story on my own personal page to my friends and family. Not every effort has rendered the results I was hoping for, but each time there’s always been at least one person who reaches out to let me know it made a difference to them, and that makes it worth it every single time. With each new effort, more and more people are reached – not just one person. That’s why I’ll never stop sharing… Our numbers are growing. We are many warriors, growing into a formidable army of truth sharers and stigma squashers.
So, to recap:
- a few short emails
- one, hour long phone conversation
- 2 hours making a video (only took that long because I’m an obsessive perfectionist)
- 1 hour gathering pictures
- 15 minutes creating 2 Facebook posts (warrior and personal)
That’s all it took to create an article which has now been viewed by over 6000 people from my Facebook page alone. That’s right folks, you heard me correctly! My stats show over 6K views on my little ol’ warrior page!! It’s received 69 comments and has been shared 59 times from my page source. I have no ability to know how far it’s spread beyond that, but one of my previous classmates from vet school sent me a message telling me my article made it to her Mom’s veterinary group that has over 9K members, and that I was famous! I was shocked! So, yeah, it’s circulating out there. People are seeing it, and people awareness is being accomplished! And THAT’S what was important in the end.
Click here to read it. And don’t be shy, please share it! Let’s keep it spinning far and wide, so it finds everyone who needs to read it! A very special thanks to those who’ve already shared. ❤ My heart is yours. #CyclicVomitingSyndromeAwareness