It's crazy to think that it's been 6 years since I got sick.
Partially because 6 years seems like a long time. But partially because I don't remember much else.
In September of 2010, at the beginning of my sophomore year of college, I passed out at work. I woke up feeling terrible, & continued feeling terrible for weeks. I experienced weakness, fatigue, dizzy spells, & several other symptoms. After months of testing, I was diagnosed with neuro-cardiogenic syncope, a form of dysautonomia. October is Dysautonomia Awareness Month, & I wanted to inform people about a little of what I have been through with this illness. However, it's been a long road since then, so some of this post will be about battling chronic illness in general.
Before my first episode, I was very active & energetic. I was a cheerleader throughout high school, & I enjoyed going climbing, running, & going for walks. I was pretty outgoing, & I was always out with friends. I was always doing something, & was always around people.
Once I had my first episode, everything was different. I was constantly sick & tired. I could no longer do the things I enjoyed, & most of my friends didn't stick around since I couldn't be active anymore & was often tired. Even worse, I had friends who accused me of faking or pretending things were worse than they really were to get attention. I had people ask if there were un-confessed sins in my life that were causing me to be punished. It was a lonely time.
Since my first diagnosis, I have a lot of limitations. I am not supposed to lift more than 10 pounds. I am not supposed to stand for more than 30 minutes. I can't do anything that causes an adrenaline rush. I can't do anything that puts stress on my heart, like cardio workouts. If I ignore these limitations, my heart starts to beat too fast. I have palpitations, which are painful. If it continues to beat too fast, my heart will "pause" to reset itself (the doctors don't like to say that it stops until it reaches 45 seconds, & the longest mine was recorded "pausing" was about 20ish seconds). When this happens, I pass out, & once I'm laying flat, my heart resets & starts beating normally again. I know my symptoms well enough now to be able to tell when it's happening, so I can generally avoid passing out, but I still have dizzy spells, palpitations, & other symptoms often. I have to avoid anything that could trigger these reactions. Normal 19-year-olds don't have this lifestyle. Normal 25-year-olds don't have this lifestyle. Normal middle-aged women don't have this lifestyle. Things have been different for me.
After my initial diagnosis, things continued to add up. I was diagnosed with neuropathy in my hands & feet, as well as complicated migraines (migraines with stroke symptoms). I have endometriosis, & I was recently diagnosed with lupus. I had my gallbladder out a couple of years ago, & I still have dietary & digestive issues. My restrictions & limitations have continued to pile up as well. Sometimes it's difficult to focus on what I can do, because I'm so focused on all the things I can't do.
Pain & illness are a common, daily thing for me. I have been to the doctor dozens of times in 2016, & that is not an exaggeration. The contact list in my phone has over an entire page filled with my doctors & specialists. I don't get to skip work because of allergies or colds. I don't do "yearly checkups," because I go to the doctor often enough that they already know what's going on. I take about a dozen or so medications on a daily basis. & that's when I am having a normal day, not a "sick" day. I look fine a lot of the time, so people assume that I am. & I try to act like it. But when I push myself too hard, the symptoms pile up & catch up to me. Sometimes things sneak up, & I have episodes in public, which is embarrassing. I don't say all of this to gain sympathy or make people feel guilty. I say this because I often think back to those initial comments I dealt with.
If you know someone who is dealing with chronic illness, they likely don't know how to talk about it. This is the battle I go through: My illnesses affect every area of my life, & so they influence every decision I make. If I talk about being sick too much, I'm afraid that I will become annoying or seem whiny. If I don't talk about it, then people don't realize I'm sick & judge me for missing events or "being lazy" at things. I try not to complain to anyone outside my inner circle of support, so if I do say something about my pain, it's likely pretty bad. & I'm used to handling pain, so that means something. I won't try to assume that this speaks for everyone who is dealing with chronic illness, but I am sure that anyone in that situation can relate on some level. Please don't assume someone is faking, or pretending it's worse than it is.
Most of all, know that this is not a punishment. John 9:1-3 talks about a blind man. When the disciples ask, "Who sinned, this man or his parents, that he was born blind?" Jesus answered, "It was not that this man sinned, or his parents, but that the works of God might be displayed in him." I have full faith that God will use every pain, every illness, & every experience for His glory.
My faith plays a major part in my illness. The weekend after my first episode, I went to church & a man spoke who claimed to have the gift of prophecy, saying he could sense medical ailments in the crowd. I wasn't raised in a church where that was a common occurrence, so I thought to myself, "Let's see what you've got." The man said that he could sense someone who had fainting & dizzy spells, & who had a pain in their right side, from their hip to their shoulder. I hadn't mentioned it to anyone, but when I passed out, I had hit my right side, & it was bruised from my hip to my shoulder. I went up to pray with the man, & as he prayed, he said, "God, I want to thank you for the gift of counsel in this girl's life, & that she will use the experiences she goes through to help the patients I see her working with in the future." I had never met or even seen this man before, so he had no idea that I was going to school to become a counselor for kids who are suffering from terminal illnesses. I have no doubt that God used that man to show me that not only was I on the right path for school & my future career, but also that although this would be a long journey, it would be for a purpose.
Here is some more info on dysautonomia & my heart condition.
More information on neurocardiogenic syncope can be found here.
Here is a great article about how to care for loved ones with chronic illnesses. It's written for spouses, but I think it can be a great resource for anyone who is a caregiver.
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