If there was one phrase that I most often heard during my twenties, it would be: “… but you don’t look sick.”
To anyone with unexplained, undiagnosed, autoimmune or “hidden” health problems, this phrase is in and of itself cringe-worthy.
No, I didn’t look sick. Not until my face went pale while my eyes rolled in the back of my head as I dropped to the floor. Even that was ill received by the General public.
What happens when you “don’t look sick” and have health issues?
- You become judged.
- You’re deemed unreliable.
- You’re deemed unemployable.
- You isolate yourself.
- You become depressed and have an understandably dim outlook.
- You become self-destructive and overly self-critical
- You dream of being physically capable again, which only drives an unhealthy obsession about what you’re not able to do.
There is little enjoyment to life and your issues are indeed a big deal, although you tire easily of being told they aren’t. You know something is wrong with you, whether you’re properly diagnosed or not. You know the meds don’t help, but you embrace the nasty side effects anyways because everyone at the hospital convinces you that your situation would be worse without them.
No one understands.
Not even the doctors who just seem to want to medicate enough to tame the symptoms instead of treating the underlying cause – because that would just be too much of a process to figure out, or they just “don’t know” what is going on or how to figure it out.
Being an unexplained, undiagnosed patient with severe neurological disorder is a form of imprisonment. You’re stuck in a broken body, remembering the days when you felt invincible and unstoppable.
I know this feeling all to well.
Here is a note I wrote on Facebook in 2009:
Many of you don’t understand what I mean by “I don’t feel well” or what I go through nearly every day. I’m not sure exactly why or what happened, but I am one of the 200-something-THOUSAND US military veterans to have come back from the Middle East area with a complicated neurological disorder that causes disruptions in my everyday life.
In 2007 I was diagnosed with Dysautonomia, and wrote a note about it. Since then my symptoms have progressed and my doctors have been working on trying to figure out what and why: two questions that have proven to be nearly impossible to answer.
I decided to write a little bit about it to give you all the chance to very basically understand what I go through:
Each day my body becomes completely tingly mixed in with pain throughout my muscles and joints. I have many bouts of shortness of breath with chest pains (especially when I walk up stairs and talk too much or too fast), and experience many debilitating headaches.
Sometimes I have a hard time with overall functioning. It gets to the point where I can’t figure out how to speak or move my hands or legs, even though I can think just fine and can still hear all that goes on around me. Quite often I lose my balance, sometimes I stumble… a lot, sometimes I can’t walk well, other times I can’t walk at all.
Sometimes I need help walking from a cane or a walker, sometimes I’m stuck wheeling around in my wheelchair, and some days I can’t even get my body out of bed. Regardless you’ll still typically see me with a smile on my face whether I feel like it on the inside or not.
Often I’ll think I am acting completely normal, but come to find out later that I wasn’t. I do lose full control of my body at times too. Sometimes it looks like I’m daydreaming, meanwhile I’ll think I’m screaming, totally unable to comprehend why people around me won’t respond. I have extreme cases of confusion where I can’t figure out where I am, what I’m supposed to be doing, or where I’m going.
Often after studying for my college classes, I end up really upset because I wouldn’t be able to figure out what subject I was reading about or I’d realize I was only looking at the letters because words didn’t make sense.
Often I burst into tears for what can seem to be for no reason, but usually its out of frustration (though sometimes I can’t explain it) because I’m not physically capable of forcing my body to work the way it is supposed to, even if you can’t see it. Because I feel trapped, with no way out.
At least once I week I curl up crying because I don’t understand why this is happening. I don’t understand why I suddenly have physical limits. I don’t understand why I have physical and mental limits.
I get horribly embarrassed when I’m in front of other people and suddenly can’t walk… or fall unconscious… or start talking like a 2-year-old because I can’t figure out how to force my body to function appropriately.
Thus, I only go out when I feel completely up to it, and typically go home early because I’ve realized when I start getting tired, my symptoms get worse.
I don’t like people to see me like this, and I try not to write about it too much because I don’t like feeling negative, nor do I like anyone else seeing me engulfed in negativity. I’ve never liked complaining, and I still don’t.
Each day it’s been getting harder and harder for me to push through it, and the veteran’s hospital hasn’t provided me with ANY of the help I need.
My support system has been getting weaker, and smaller. Part of that is my fault for pushing people away, and allowing those close to me to not fully understand what I go through.
If you’re wondering why we haven’t been as close as we used to be and wondering why I’m bringing up my health after so much silence… my not feeling well hasn’t all the sudden sparked up again… its just getting overwhelmingly harder for me to push it aside or ignore.
THIS was my reality for 8 LONG years…
There were few days where I didn’t wish for my life to end. All I knew was pain, numbness, and suffering. It was my own personal Hell.
My symptoms started suddenly in October 2005, while stationed overseas in the Middle East. I was finally diagnosed in 2009 with complex partial seizures. In 2011 I was diagnosed with several autoimmune issues: chronic pain, chronic fatigue, fibromyalgia, lupus, demylenating polyneuropathy, and 7 additional diagnoses that I can’t pretend to be able to pronounce, spell, or understand. It felt like the doc wrote a death sentence. I walked out of my neurologist’s office once again, with no help, no relief, and no hope.
At some point when you walk through a life of complete misery… too broke to make changes you know you need, and too sick to make an income you know you need to afford to live… you realize nothing is ever going to change and you’re caught in a cycle of excuses. You start to wonder… What if you could feel better??
At that point you have two options:
- Accept living a life that sucks, barely able to hang on, filled with depression and anxiety
- Find little changes to make that pieces together what we need to create those changes ourselves.
In 2013, I decided to take a chance and make a change. Nothing was helping. Nothing was working. I was continually getting worse. Medications made me worse (like pancreatitis and liver failure worse).
My doctors made it clear a natural health lifestyle would kill me faster than my condition. I was desperate to end my suffering… so I started looking into natural health alternatives, figuring I had nothing to lose.
I was skeptical (did I mention hopeless??), and honestly prayed that my neurologist was right… that a natural health lifestyle would kill me faster (since I was unable to end it myself).
No matter what happened… something needed to change. No matter what the results were, my suffering needed to end.
Starting A New Wellness Journey
We started out with cleaning up my food habits, fully embracing the paleo diet using the 30 Day Guide book. If you don’t know about the paleo diet, I strongly suggest looking into it. Think eating mostly veggies with a side of meat/protein (sugar free, dairy free, wheat/gluten-free, avoid processed foods).
It took more effort for me to cook than it did to deal with sugar cravings or the fact that my boyfriend at the time (now husband) and I turned our eating habits upside down.
He ended up losing about 25 lbs. I lost 10 lbs, and significantly reduced my seizures.
Month 1 & Results:
- My seizures reduced from averaging 6 seizures a DAY down to 2 seizures in that last week.
- I was able to walk up a flight of stairs unassisted (slowly)
- My dog accompanied me on a 1/8 mile walk… the first time in 7 YEARS!!
It didn’t take long for my skeptical perspective to change. In fact, I noticed such dramatic positive results, it sparked the research addict in me to look around our home to see if anything else there could be contributing to bogging my body down and preventing healing. (I was trained in information research analysis by the Navy, and highly skilled at it.)
Month 2 Actions
Looking through my research into common household products, I was absolutely disgusted by what I found. Even the products labeled as “green,” “natural,” and “safe” had some nasty ingredients in them that may produce some significant health issues… and all LEGAL for companies to use!
I learned that those chemicals can actually be absorbed in your skin in as little as 6 seconds… and in less than 30 seconds those chemicals will be in your blood stream circulating through your body… causing problems with just about every type of cell and organ in your body.
Removing harmful ingredients from more than just food…
We overhauled everything!!
- Cleaners (kitchen, bathroom, car, garage, outside, laundry)
- Hair care products
- Body soaps, washes, hand soaps… etc…
- Shaving products
- Lotions and skin care items
- Deodorants and antiperspirants
Everything. Everything had at least one harmful ingredient… most had numerous! And here I had thought that spending a little extra for “high end” products was doing the right thing… I was so embarrassed to see I was suckered into clever marketing… AND it was preventing my body from healing.
I was actually paying companies to keep me sick! Disgusted… embarrassed… betrayed… angry… words doesn’t even come close to describe how I felt.
So angry… I did something about it. Not only did I throw away 2 kitchen trash bags (13 gallon sized) of harmful product, but I created an online course to share my findings with everyone.
My Panic Attack
Seeing all that product in those two big bags… all I could think about was all the money I was going to throw away. I only made $974 each month on veterans disability… not even enough to cover my half of the rent, let alone utilities. And there in those bags were hundreds of dollars worth of items I had purchased and intended to use… I was literally throwing away money. And it was trash day.
I sat there in the window, watching. The bags popped up the top of the trash bin. I sat there watching the garbage truck come down the road, around the bend, and in front of our house. My hands shook. I almost ran out as fast as I could to retrieve it all before it went in the truck. It took me MONTHS to afford all those bottles… some partially used… many still sealed, unopened.
And then the truck left. Our bin was empty. And me… well I felt a wave of relief. It was all gone. I made a promise to myself that day… I would never, ever, willingly use a harmful chemical on or around my body.
Adding Essential Oils To My Daily Routine
We use a variety of essential oils in with our daily routine that helped significantly with supporting my body through its healing phase.
- Skincare additive/fragrance
- Haircare fragrance
- Room freshener spray replacement
- Neurological suport
- Digestion support
Frankincense, lavender, lemon, and copaiba were the main oils I used. I also used pre-made blends called Valor, Peace and Calming, and Abundance (this is where I buy my oils).
I used the Valor blend (my favorite for neurological support and because it smells heavenly) several times a day, diffusing it through the night and applying it to the back of my neck every morning and sometimes in the afternoons. This blend did a fantastic job at helping me recover from my seizures faster.
Month 3 & My Health Results:
60 days after I began my wellness journey, I had my very last symptom… a grand mal seizure.
Since then, my seizures totally stopped. As did my migraines… my muscle weakness… fainting… falling… stumbling… confusion… tongue tripping… and vision fading.
I was able to start going for regular walks again (1-2 mile walks), AND managed to slowly jog 1/8 of a mile WITHOUT collapsing afterwards!!!
A Year Later… My Life Was Entirely Different
Fast forward to 2014…
I married, and was able to have a child… despite the fact that several doctors told me my body wouldn’t be able to handle pregnancy and I would be risking my life and the baby’s life.
I still became exhausted rather quickly, but slowly regaining strength and endurance.
I no longer dealt with chronic weakness or unexplained muscle fatigue.
I’m able to focus for longer amounts of time, and actually was remember what I focused on (a major deal).
I think clearly enough to proofread literary works, and started to volunteer my time to coach a few friends through essential oil use, and teaching a few coaches how to properly support clients who endure similar chronic health issues as I’ve overcome.
2 Years Later – 2015 update – I am completely symptom-free, AND regained an income!
My family eats a mostly Paleo diet with some organic ancient grains now that my gut has healed. I’ve stepped up our essential oil use even more, and found personal care products and cosmetics without toxins in them…. which means I no longer have to DIY or go without everything!
My husband and I are both feeling much healthier, energetic, and better rested… and I’m able to go for long walks (2+ miles), and still function without needing to sleep the rest of the day.
I have struggled with regaining fitness, but recovery is a slow process and I can’t expect myself to dive back into a rigorous weight lifting and running program like I enjoyed before getting sick.
My employment struggle
Since leaving the Navy in 2008, I’ve been unemployed… not by choice. I cannot count how many employers have told me that I was “unreliable” because I can’t schedule my seizures, fainting, physical weakness, or other symptoms.
This means… I was still only making $974 each month… until I decided earlier in 2015 that I was no longer going to wait for employment. I fixed my health largely through mindset and thinking outside of what is normal… and it dawned on me that perhaps all my problems can be handled with the same creative thinking.
In 2014 I started engaging in lifestyle coaching helping coaches understand the mindset and struggles of their clients with chronic illnesses, but was providing that coaching for free.
In 2015, I found several ways to earn an income while still coaching, writing about my journey, helping friends create their own online presence, and endorsing some of the products I used that helped me regain my health.
Having an income other than my tiny amount of disability feels incredibly liberating. FINALLY I have an element of independence again! I’m FINALLY able to contribute to our living expenses, after my new husband and I lived together for 3 years (out of the kindness of his heart) and my not being able to afford much of anything. AND I was able to handle this with an infant at home with me! Just the most incredible feeling.
2017 Update – Embracing second chances with no looking back
I really do feel as though I have a second chance at life, and am working from home to help other people achieve their own personal success stories.
My 4 year old is the most healthy child I’ve ever encountered… no one would ever know I had all the issues I did before having him. We also welcomed our second son this summer too… also healthy and built like a little tank!
Still 100% free from my symptoms!
I couldn’t feel more blessed with how my life has changed, and can’t wait to see more success testimonies from the men and women I coach.
Most people who hear my story are amazed and can hardly believe how much health strife I’ve endured. As miserable as it was to go through, I’m thankful to have experienced it because it gave me a perspective seen by few and motivates me to help other people like you overcome your own hardships.
That’s my mission now: to help motivated individuals overcome their struggles. To help people pull themselves out of their own personal Hell.
2018 Update: A little transparency of my life story, how I overcame, and where I am now
2018 was a physically stressful year. My husband returned to our family from being gone most of the prior 3 years to sea duty with the Navy. Within a month of him leaving his ship, we loaded everything we would need for two months of full-time RV living with our two young sons and two giant dogs and hit the road from Virginia to Rhode Island… and a month later again from Rhode Island to Texas.
Not only did my symptoms not flare up once, but I was able to handle the extra physical strain of not having a yard for the dogs and boys to run. I also managed a growing business, experiencing over 230% growth. It felt amazing, freeing, and exciting to be able to handle all that life threw at us.
Words cannot express how thankful I am to have closed that chapter and open a new one filled with encouragement and love.
I cannot adequately describe the physical and emotional pain and horror of what I endured to anyone who hasn’t experienced it first hand. All I can do is pay it forward and be there for anyone I meet (and you if you choose to take me up on the offer) to help coach and cheerlead through recovery. Because it is possible.
- You can live without horrendous pain.
- You can be free from a body that decides it randomly no longer wants to work.
- You can stop suffering, and still live.
- Healing doesn’t stop with regaining physical wellness
- There are always things you can do to make money from home, even when you’re enduring chronic illness and have little time
You can take your life back! I know, because I did.
Nicole is a military-trained research analyst, homeschooling mom, healthy lifestyle coach, and flexible business consultant. After living through and overcoming a season of homelessness and chronic health, Nicole developed a passion for helping others using functional nutrition, herbalism, and aromatherapy. She now uses simple lifestyle shifts, self-care, and developing healthier habits to help people move through difficult times.