It seems today, that most everyone I know, is on some form of social media. My Facebook feed is filled with all the latest news headlines, inspirational quotes, friend's vacation pictures, articles about political and social causes, etc., etc. Sometimes, in the midst of all the big personalities, and what seems to be popularity contests between social media contributors, it can be intimidating to post something honest, and personal about myself. Sometimes it's just easier to keep things simple and post a cute photo, a Bible verse, or an article someone else wrote, or just not share anything at all and just scroll through everyone else's posts.
We only see the parts of people's lives that they want us to see. It's easy to hide behind a phone or computer screen, and only let people in on the parts of our life that we are willing to expose. Because of this, I have a love/hate relationship with social media. I hate it because it seems to have taken away the necessity for really getting to know people on a personal level. I love it because it does provide us with a platform for sharing things we feel are important for people to know. I'm going to take advantage of that platform today, to shed some light on something personal to me, in hopes that my story will help someone else.
Based on my social media posts, you might know me as a Pastor's wife and homeschooling mom, who loves Jesus, her family, nature, & her dog. While all of those things are true, there is so much more to me. There's almost always more to someone than what we see on the surface. From all outward appearances, you could conclude that I'm a healthy, energetic, 36 year old. What you see is the poker face I've spent years perfecting, because it's easier than trying to explain the details of what's really going on inside me so much of the time.
If you've spent any time with me, you probably know that I suffer from chronic migraines, but that's not a rarity, right? After all, migraine statistics estimate that 13% of adults in America suffer from migraines. One reason I tend to keep my health issues private is that I've lived with my condition for so long, that it's quite cumbersome to explain the details to people who really don't seem to want the answers to the questions they ask. Then comes the frustrating responses when I DO share some of the details. People say things like, "Oh yeah, I get migraines too, have you tried Excedrin Migraine?" or, "Try putting pressure on your temples for 15 seconds" or, "Have you tried a gluten-free, dairy-free, sugar-free diet?" or "You just need to try THIS supplement!" It's frustrating, because YES! Trust me, I've tried it ALL. The truth is, most days I look fine on the outside, but many days, on the inside, I'm not.
I have an "invisible illness".
Maybe you do too.
My goal in writing this is to:
1. Raise awareness for "invisible illnesses" like mine, because the reality is, some people still don't have a diagnosis for their chronic condition, or they have been told "it's all in their head". Maybe the details of my story will help you find answers to yours.
2. Be an encouragement and give HOPE to others who might be fighting their own battle with an invisible illness
3. Share some "tricks of the trade" with you that I use to help me through my most trying days (stay tuned for a part 2, that I will call "What's in my bag".)
So, here goes!
I've had migraines for most of my life. I started having migraines with vomiting about once a week, when I was 8 years old. Slowly they grew worse and more frequent. My parents took me to a neurologist where I was diagnosed with chronic migraines and chronic daily headaches. Over the past 28 years, I've seen many different doctors - neurologists, eye doctors, dentists, allergists, obgyns, chiropractors, etc. I've had all kinds of tests, and have been on so many different medications I've lost count. For many years, I was told there was no underlying "cause" for my migraines, other than all of the "normal" migraine triggers like foods, environmental factors, etc. When my migraines became debilitating (unable to work), I went to yet another neurologist, and was told that I just needed to "get over it", and learn to accept and live with my migraines so that I didn't start "feeling sorry for myself".
It wasn't until after I had my second child, at age 25, that I finally receive a diagnosis that explained my then 17 years of chronic migraines and an array of other unexplained symptoms. One summer day, I was outside mowing our yard, when I passed out with the lawn mower still running and my little kids playing nearby. I don't even know how long I was out, but I awoke to my toddler sitting by me trying to wake me up. I knew then, that I HAD to find answers for what was really going on. By God's grace, I was referred to an amazing cardiologist who knew just what testing to do! She was able to determine that I have a condition called P.O.T.S. (Postural Orthostatic Tachycardia Syndrome). In that moment, all of those years of unexplained symptoms, finally made sense! Someone finally took the time to get to the bottom of things, and was able to diagnose the problem! Even though there is no cure for POTS, I finally had found a doctor who listened to me, and didn't tell me to just "live with it".
It's believed that I've had POTS my whole life, but the symptoms of POTS are sometimes masked until they are brought on by something like - a long-term viral illness, surgery with general anesthesia, pregnancy, a traumatic experience...(ALL of which I had prior to my diagnosis) I just never had the correct diagnosis. POTS is a little difficult to explain, but here's brief and limited description from The Dysautonomia Project Book, pg. 164:
"One of the most common forms of dysautonomia, POTS, is a dysfunction of the autonomic nervous system that involves abnormal symptoms in many parts of the body including - abnormal blood flow to the heart, lungs, and brain. It often involves problems with digestion, temperature regulations, and many other involuntary functions of the body."
One of the main symptoms that POTS presents itself as for me, is debilitating migraines. I've lived for 29 years with chronic migraines. Throughout the years, I've also been diagnosed with vertigo, TMD/TMJ, chronic endometriosis, chronic bladder/kidney infections, and hormonal imbalance, to name a few.
Chronic pain has become part of who I am.
I've always had a desire to be a morning person. I set my alarm every morning with the best of intentions. I have plans of getting up an hour or two before the kids, having a cup of coffee, and reading my Bible by the window. But then morning comes, and sometimes it's impossible to get out of bed. I slowly and cautiously open my eyes. I force my jaw open (TMJ locks my jaw up). I barely peek through my eyelids, and as soon as the sunlight from behind the shade hits my eyes, I quickly close them again. I try to find a comfortable position to ease the jaw and neck pain I awoke with, but to no avail. If I can manage to bring myself to sit up, I reach for my medicine bag that I keep by my bed, and swallow down a few pills. I lay there, hoping that the pain and dizziness will fade, just long enough for me to get up and get my kids started on breakfast and school. (Thank God they are older now and are able to do a lot of things for themselves!) Sometimes, the pain calms down pretty quickly, and I am able to have a semi-productive day! Other days, the pain is unrelenting, and I spend most of it in my bed surrounded by ice packs and pillows. I made this picture (I did not make the drawing in the middle, I only added the words) to show the main symptoms I experience from day-to-day:
Not every day is bad though, praise God! On days when I open my eyes with no pain behind them, I sit up, and literally say a prayer of THANKS to the Lord, for giving me a pain-free morning! Sometimes, those mornings turn into a full, pain-free day! Those days are a blessing that are never taken for granted! Sometimes, I wake up feeling wonderful, and it's not until later in the day, that something triggers an episode. It could be something I ate, fluorescent lighting at a store, a change in weather or barometric pressure, bending over too much while cleaning the house, someone's perfume, music that was too loud, a stressful situation, forgetting to take my vitamins, eat enough salt, or drink enough water....the list of triggers is long and tedious.
I used to be determined to keep track of every single little thing that was a trigger, and tried my best to avoid them all! But then I realized, there is a difference between a trigger and a cause! A trigger starts something that is already primed to happen, while a cause is the reason for something to happen. While it IS important to be aware of the triggers that cause a chronic condition to be exacerbated, I've learned that I cannot allow myself to fall into the trap of blaming myself for being the one who "caused" another episode! This is NOT my fault!
I do my best to show up to things, to engage with others, to maintain a clean house, to remember all of my day-to-day responsibilities, to meet the needs of my children, my husband, and my church family - but honestly, some days, it's not easy. Sometimes I'm not even sure my own family fully understands the pain I tolerate and push through just to be with them. I don't expect anyone to understand completely; I just want them to know that I try.
When you feel horrible on the inside but it doesn't show itself on the outside, sometimes people don't believe you are even sick. They treat you like you are just being dramatic. Then there's the "one-uppers", who when you mention having a migraine, they feel the need to say something like, "Yeah, I've had a migraine for a week now, I understand". No. No, you don't. Please stop comparing.
I just want to tell anyone who is struggling with an invisible illness of their own, that while I may not be able to physically feel your pain, I understand.
I understand that there are days you feel like you can't get out of bed, but you do anyway.
I understand that sometimes people view you as lazy because you weren't able to accomplish what they thought you should.
I understand cancelled plans.
I understand the emotional and mental toll that an invisible illness takes on a person.
I understand that people downplay the severity of your pain and sickness.
I understand the frustration of brain fog and memory loss when you are trying to communicate with others.
I understand the anxiety and fear that creeps in.
I understand the desire to engage and be present, but your body won't allow it.
I understand that no one but YOU can fully understand what you are going through.
But, I'm here. I believe you. I see the struggle. I see your strength. Keep fighting. I will too....
If you are reading this, and you don't have an invisible illness, please know that just because you can't SEE someone's pain, doesn't mean it isn't real!
Be kind. Everyone you meet is fighting some kind of battle. Even when you can't see it....
If it wasn't for my relationship with Jesus Christ, I don't know how I would push through the challenging days. These are some of my favorite Bible verses, that remind me of God's mercy and grace, even in my time of need. I pray they are an encouragement to you today as well, no matter what you're going through!
Stay tuned for part 2 titled "What's in my bag".
