I’m not sure if I would have ever identified myself as particularly “healthy.” Elementary through my high school graduation, my classmates would casually throw around the phrase “Melissa skip day” if I missed school. I was sick somewhat often, getting some kind of throat infection at least 3-4 times per year for several years in a row. I had my fair share of stomach viruses, colds, and even a 2-month bout of mononucleosis. But nothing seemed all that “out of the ordinary.” So I had a weak immune system?… So did a lot of people. In college, I was sick less often, and I thought I had probably acquired enough germs throughout the first portion of my life to easily get through my twenties.
In the winter of 2013, approaching my 24th birthday, things began to change. A few months prior, I had been sick with various throat infections and fevers. Doctors tested me for strep — or they didn’t, and just assumed — prescribing me the same amoxicillin tablets I’d received dozens of times throughout my life. But at the beginning of January, I knew there was something distinctly different about my body. I wasn’t kicking the sickness like I had been able to do over and over again my entire life. I had strange symptoms, ones that at first were hard to identify; certainly ones, that for my age, didn’t seem to make much sense.
I started sleeping all of the time, feeling fatigued no matter how much rest I had the night before. My severe joint pain kept me from running the half marathon I had started training for. Running was my go-to for therapy, exercise, release – it wasn’t an option anymore. I had to quit my contract job with a company I loved. I scaled back on my own business, which at the time could have grown to be twice its size. I stopped going out with friends, finding refuge in my bed, behind my computer screen, or closed eyelids. Weekdays meshed into weekends, and nothing had focus; soon, everything began to lack purpose. I was sick. I had seen a handful of doctors, but no one could tell me exactly what was wrong. No one told me how I could get better. My battle with anxiety disorders and depression was constant. Nothing was stable, not my body, nor my mind.
Somewhat early on, my general doctor did discover some vitamin deficiencies. Turns out I don’t absorb the B12 vitamins naturally through food or supplements. B12 gives you energy – playing a key role in the normal functioning of the brain and nervous system, as well as the formation of the blood. My doctor put me on several supplements and injections, and told me I’d start feeling better. I didn’t.
Through the first few blood tests, she also found that I had a very low white blood cell count, leukopenia, she called it (sounds scary, right?). She sent me to an oncologist – and for obvious reasons, immediate panic ensued… Have you heard of conversion disorder? It landed me in the hospital. But as it turns out, the oncologist said that this wasn’t looking like a blood cancer, but more like an autoimmune disease. She referred me to a rheumatologist, and I waited over two months for my first appointment.
This is the nature of the game. You get sick, and wait an absurd amount of time to see anyone who can take your blood (like, 12 vials full), and determine what could possibly be wrong. In the meantime, because, you know, there was plenty of extra time in between these appointments, I began to do my own research. I read about every autoimmune disease, I scoured WebMD, I pondered (and still do) if this could be Lyme disease – a bacteria that is transmitted through the bite of an infected tick (disgusting, I know). Without treatment, it can spread to your joints, heart and nervous system. Both my father and grandmother have suffered from Lyme – so it’s something that’s been in the back of my mind (Lyme and many autoimmune diseases, including Lupus, have the same symptoms – and all are hard to test for and diagnose). This is just a sample of my overly active, anxious brain.
So, doctors can’t solve everything, and as it turns out, science actually doesn’t know everything, either – at least not yet (at least not probably ever). I naïvely assumed that doctors could just fix whatever ailment I had. There must be science to help me, to cure me. I live in the United States, with access to great doctors, knowledge, medicine. This should work out just fine, right?
But we don’t know why we get autoimmune diseases, and we certainly don’t know how to cure them – best case scenario, we can treat the symptoms. We also can’t rely on blood tests to tell us the answers. There are so many unknowns and seemingly nonsensical factors. Say you have an autoimmune disease; it can literally be attacking healthy cells and healthy organs, but you can test negative on some of the most basic blood tests that are supposed to “prove” it’s “X” disease. They call these “seronegatives” – and guess what? They’re very common. I also found out that Lyme disease is severely misdiagnosed, often leaving patients (including a friend of mine) undiagnosed. There are only a handful of Lyme disease doctors in the entire nation. General practitioners are often afraid to diagnose Lyme unless you have the “right” blood test results and the rash from the bite of the infected tick. The politics surrounding medicine are enough to make my head spin. Much like after taking too much Klonopin – kidding, really.
Now I’m scheduled to see an infectious disease specialist with a follow up with my rheumatologist shortly after. And until then, I wait. I take my medicines (about 12 pills and supplements per day), I conquer my fear of needles by injecting myself full of methylcobalamin. I try acupuncture, homeopathy, I go gluten-free; I keep doing yoga on the days when I feel strong enough. I rest. I try to act like a 24-year-old. Sometimes I succeed, rather well actually. Other times, well, I find shelter back in my bed, behind a screen, locked away from the people doing “normal” things. Socializing isn’t always easy.
It’s an interesting experience to have your normal life taken from you. This can be anything, really – health, career, family, relationship. I’m not saying I’ll never experience health; I’m not saying every day feels like I’m withering away. I do have normal days. But my life consists of a lot of maybes right now. What kind of autoimmune condition? Is it Lupus? Is it Lyme? Is it a disease that will require me to be on heavy antibiotics for two years? The rest of my life? Maybe. Maybe not.
Questions left unanswered is the story of our 20-something lives. Our entire world is pretty much a giant question mark — sometimes that’s refreshing. Other times, it leaves you wanting to pull out your eyelashes, and spiral into a sweaty panic attack. The unknown is frightening, confusing, and sometimes, entirely unfair. Yeah Taylor, “we’re happy, free, confused, and lonely” AT THE SAME GODDAMN TIME.
Most of us float (swim, almost drowned, whatever) through our twenties unsure of where we’ll work, where we’ll live in a year (more accurately, A MONTH) – hell, I rarely know what I’m eating for dinner. It’ll probably be gluten free cereal and a banana. Sometimes, I don’t know how I’m going to pay all of my bills. Sound familiar to any of you 20-somethings? Yeah, I bet so.
So I do what all 20-somethings do. I keep my head up, I fight, I turn on “The Seeker”, and keep searching. I look for the answers to my unknowns; I live passionately and fully – and when I can, I enjoy life with spontaneity… (with my pill box in tow)
But hey, I’ve got this. You’ve got this. It’s what we 20-somethings do.
Survival Mode: Engage.
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sounds a lot like sarcoidosis to me…l
aw love. i hate reading this. it sounds all too familiar.
Hope you’re feeling better. I understand very well what you’re going through. Lyme disease is strange. Some people get better, and some people keep having problems. Chronic Lyme sometimes runs in families, and you have a family history. If you live in an endemic area and if you spend any time in wooded or grassy areas… But you probably know this already. No matter what, always remember that you are a human person, and that you have a dignity that no sickness can take away. You are worthy of love because of who you are, even if you can’t “do” anything. Its hard to remember that, I know, but its still true. :)
Thank you for reading. Some time has passed, as have more doctors, and I have been FINALLY diagnosed with chronic lyme ( + Bartonella, Babesia and Tularemia). Definitely having a lot of neurological symptoms now and just getting started on treatment (did a lot of body prep with supplements and medicinal diet) and I will start IVs in a few weeks. I live in Texas, but am (-was-) an outdoorsy person so it makes sense to why I was at risk. My mom suffers from several symptoms and has recently seen my same LLMD. Thanks for the kind words of encouragement. Doing everything I can to get better – hope you’re doing well.