I just learned that September is Pain Awareness Month. A time to recognize the needs of those with chronic pain. Making this the perfect time to introduce a topic we’ve been preparing for you for several months now. We’re bringing you a multi-part blog post on the importance of being your own health advocate.
For this post, I’m teaming up with my sister JoJo. You may remember her from her previous post on How A Colorful Revamp Banished Bedroom Blandness. Something you might not know about both of us is we both have our own health journeys that brought us to becoming our own health advocates.
Come along with us as we discuss how to be your own advocate. Let us know in the comments if any of this resonates with you, we’d love to hear your story!
Disclaimer: The information on this blog is based on personal experiences and should not be considered medical advice. The information on this blog is not intended to diagnose, treat, cure, or prevent any disease. Please ask your doctor if you have any questions.
Affiliate Disclaimer: This post may include affiliate links. Please read my disclaimer page for more info.
Elisha’s Beginnings
I first started experiencing pain symptoms at the age of 11. Being young and experiencing something I could not explain or show to others taught me about the medical world. Especially how much they don’t know. I don’t mean that in a rude way. I simply mean that not everything is known and understood, especially when humans all experience life and pain differently.
There appears to be a missing puzzle piece of how to treat everyone equally and uniquely for their conditions with only the little knowledge and understanding we have. The reality of that sucks because it means that a lot of us, especially those of us with invisible diseases, will go on to never receive proper treatment.
I grew up going to many doctor’s appointments and being dismissed for being young. The assumptions that they make in the medical field, if you complain about pain at that age, is typically that you’re experiencing growing pains, or you’re lying to get attention. I’ve also been told that I couldn’t possibly have a certain diagnosis because I was too young. I’ve been dismissed by older people quite often as well for being “too young to know what pain is.”
The biggest thing I learned over the years, through all of that, was that complaining about it doesn’t fix it.
Everybody has that moment in life when they realize it’s time to stand up for themselves. It may take a while. I took a proactive step to advocate for my own health after being dismissed for being too young and complaining too little. But like, why bother complaining? That’s such a waste of valuable time.
This is where I’d like to introduce the idea of bringing your villain story to the plot. You see, villains know how to fight for themselves. They stand up for what they want. Their goal isn’t to save the whole world (I mean, kudos to you if you have dreams that big). It’s to save themselves and those they love and to have their voice heard.
Does it make sense yet? Choosing to embrace your “villain story” is your first step towards advocating for yourself. To be clear, when I say “villain story” I don’t mean that you should choose the worst attributes of a villain. Don’t beat others down physically or with your words…don’t blow up the world. But do speak up for yourself, politely. Be the badass – the polite badass – villain in your story and let’s learn how to be your own advocate.
And now over to my sister!
JoJo’s Beginnings
Much like Elisha, I’ve had various undiagnosable health issues most of my life. Usually, they’re chalked up as something that’s just “in my head” or a “huh, we’re not sure but doesn’t seem serious so it’ll probably pass – if it doesn’t, check back in with us in 6 months”.
More recently I had a male doctor not take me seriously because I “wasn’t old enough” for the symptoms I was describing to be possible. Additionally, the tests to find out are “really expensive” so we should just do nothing, obviously. Not once did he tell me the cost of said tests so I could determine for myself if it was worth it.
By the way we wrote these at completely seperate times and had no idea what the other was going to write.
-Elisha
He was with me for maybe a total of 10 minutes on a new patient visit. About half of those minutes were spent on him asking how I was referred. I said I see a functional medicine doctor, and then he said his wife is interested in that and was asking questions about how it works. What a waste of time! I actually shared more info than he did, it should have been a free visit.
Elisha and I have both had similar interactions over the years with physicians which drove us to do our own research.
Our mom was also an inspiration in how to be your own health advocate. Our older sister was in the hospital for a period of time and on a liquid formula diet. My mom was very unhappy with the lack of nutrition in Ensure. She did a lot of research and made her own formula full of vitamins and nutrients.
Anyhow, really where everything changed for me was about five years ago. I got a terrible bout of food poisoning from a kale salad and was sick for months. I lost a lot of weight, felt horrible, and went to tons of doctors. Who did tons of tests, and there was no solution.
Was it parasites? No.
Gluten allergy? Not officially. Although my GI doc agreed if eating gluten makes me feel bad then I have a sensitivity and shouldn’t.
Was it an infection? It wasn’t.
I even had an endoscopy and the only result of that was “yeah, your stomach lining is inflamed and you have GERD”.
The only “solution” offered at the end of months of suffering was you need to change your diet, it’s gonna be bland + take Pepcid. This was already after I had eliminated so many things, and I was told to eliminate everything with flavor.
Onions, check.
Garlic, check.
Lemons, check.
Most spices, check.
I love food and I love cooking, so that answer was unacceptable. That’s when I thought it was time to take matters into my own hands.
I’m not a big fan of taking medications in general, but at the time I was much more open to it. Proton Pump Inhibitors were getting a bit of a bad rap in the news, which made me even more skeptical if it was something that I really wanted to do. I did a little more research on side effects and decided they weren’t for me. It would be a last resort. I’d already suffered this long, what’s a little longer to try and find a real solution?
I started looking into more natural treatments for acid reflux/GERD and it really opened my eyes. I read this book, which talks a lot about foods that promote a healthy gut, and what foods should be eliminated and why. Turns out I didn’t have to eat flavorless food, I just needed to be eating different and better foods.
This was both an easy and a hard concept for me to wrap my head around as I already had a pretty clean diet. But I jumped all in and did what the book said, and I started to feel better. Not great, not overnight, but definitely an improvement in a short amount of time.
A little time passed and then I read this other book, which I agree with a lot of things on, especially the idea that some vegetables are inflammatory to your system. I tried following the Plant Paradox diet pretty strictly for quite some time and my acid reflux improved even more! It still wasn’t perfect, and if I ever had something that wasn’t so great for me on a rare occasion I would suffer for some time. But I did what a variety of doctors couldn’t do for me, which was to actually improve how I was feeling. I did that on my own!
In the last couple of years, I started seeing a functional medicine doctor via Parsley Health and that combined with some more diet tweaks based on my own research + regularly doing yoga has finally got me to a place where I feel my best.
A functional medicine doctor has a more natural approach and while they may prescribe medications, they’re more likely to prescribe supplements. They also tend to do a lot of bloodwork and check for things that a normal doctor wouldn’t. With some special tests, It turned out that part of the reason I couldn’t totally get past my stomach pains with diet changes alone was because I had an overgrowth of another type of bacteria that no one else had tested for.
I haven’t read any diet books recently, although I’m always researching on the internet, and especially on Twitter/X now. Taking my health into my own hands has been a game changer for me personally. This approach might not be right for everyone, and of course, depends on your condition, but I will say no one will care about your health as much as you do.
In America, we have a culture of popping a pill anytime something is wrong, and it doesn’t fix the root cause. It just masks symptoms, while often causing additional problems.
If I didn’t get tired of not being taken seriously I might still be feeling awful. These days I know my trigger foods and what is likely to cause me problems (gluten, tomatoes, spicy foods, and coffee sadly) but the trade-off of not feeling awful 24/7 is totally worth it.
As Hippocrates said, “Let food be thy medicine, let medicine be thy food” and “All disease begins in the gut”.
That’s where it all began for us. What’s your “villain story?” Have you had a defining moment yet that made you realize you had to be the one to take control of your health journey? Let us know in the comments how it all started for you and if you have any questions!
In a coming post, we’re going to continue the discussion on how to be your own advocate. Make sure you check back in as we’ll be posting these on Mondays!
If you liked this post, check out these ones:
- 10 Practical Things To Do To Manage Chronic Pain
- How Does Yoga Affect Chronic Pain: A 30-Day Challenge
- 7 Easy In Bed Stretches For Travel
P.S. If you’re looking for an activity you can do on a bad flare day and from bed or with your long-distance friends, download our free trivia here.
Playing trivia is a great way to still participate in fun activities with your friends and family without ever leaving the comfort of your bed. And it helps you keep your long-distance relationships growing!
Be sure to check out the free Trivia by clicking here!
