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.
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 veterans to have come back from the Middle East area with a 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/fast), and experience many 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. 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, and sometimes I'm stuck wheeling around in my wheelchair. 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 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, I get 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.
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 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 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 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 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.
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 could afford... you realize nothing is ever going to change. At that point you have two options: accept living a life that sucks, barely able to hang on... OR... find little changes you can make until you're able to piece together what you need to create those changes yourself.
Fast forward to 2013. Nothing was helping. Nothing was working. I started looking into natural health alternatives, figuring I had nothing to lose. I was skeptical, without hope, 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).
After one month on the Paleo diet, adding essential oils to my daily routine for therapeutic purposes, and replacing cleaning and personal care products in our home that contained toxic ingredients... wow did my perspective change!!!
In just the first week, I was able to clean an entire room at one time (vacuuming AND dusting). Those of you who have endured chronic illness knows how much of a big deal that is! Usually I would have to choose one task in one room, and it would take me 1-2 full days to accomplish it.
After the first 30 days: My seizures decreased from multiple times a day to twice in a week. I slowly grew stronger. I no longer needed my wheelchair and walked across the house without my crushes or cane. That first month I was down 15 lbs too. I had more energy and mental clarity than I had in YEARS!
I suddenly realized I really could take my life back. I realized I could regain control over what was going on with me. I realized I wasn't a lost cause. And I had to start sharing my experiences with everyone!
Suddenly realized I could take my life back... it wasn't impossible. You can too! @warmlyrustic http://wp.me/p5mKU3-is
The second month: my seizures stopped entirely. As did my migraines. As did my muscle weakness, fainting, falling, stumbling, confusion, tongue tripping, and vision fading. I was able to start going for walks again (1-2 mile walks), and even managed to slowly jog 1/8 of a mile without collapsing afterwards!!!
Fast forward to 2014. I married and was able to have a child I was told would kill me if I tried to get pregnant. I still tired rather quickly, but slowly regaining strength and endurance. I no longer dealt with chronic weakness or unexplained muscle fatigue. I was able to focus for shorter amounts of time, and actually remember what I focused on. I could think clearly enough to proofread literary works, and started to volunteer my time to coach a few friends through essential oil use and nutritional medicine.
2015 update - I am completely symptom-free. 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 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 function as expected. 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 when I first joined the Navy.
2017 Update - We still can't believe how incredible I'm doing. I really do feel as though I have a second chance at life, and am working from home to help other people endure their own personal success stories. My 3 year old is built like a tank... no one would ever know I had all the issues I did right before having him. We are even expecting our second child!
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.
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 do so and still live.