I have chronic Lyme disease. When I say it out loud it doesn’t even seem real. There is something living inside of me, a parasite of sorts (although it’s actually a bacteria), leeching off of me and interfering with my body’s normal functions throughout the day.
That last part I was aware of. For the last 18 months or so, I’ve had a slew of weird symptoms. Bladder symptoms that recurred on a mostly monthly basis, followed by digestive system troubles, and other assorted things such as tingling and numbness in my hands and toes.
People have been asking me how I’m doing and I don’t know how to answer. I feel okay, I guess. It depends on the day. Some days I am glued to the couch, sick as a dog. Other days I’m out to dinner with my boyfriend, as if everything was normal.
I think it’s the alternating between these two realities that is the most difficult, both for me and for others to process. People see me working, studying, instagramming as I always do and they assume that everything is normal. Couple that with the fact that chronic Lyme sufferers don’t tend to bear any outward physical signs of their ailment, and we come off as perfectly healthy. But then I feel a weird sensation in my bladder, or a tingling in my hands, and I know that everything is not fine. There is something inside of me, wreaking havoc and treating my body as if it were an all-inclusive resort.
I live every day with this constant reminder that I am not a 100% healthy individual, at least not yet. It is there when I wake up, when I eat and when I go to sleep. You really begin to realize how miraculous it is when the human body is 100% functioning when it stops, because of how much of your time and thought is then spent trying to get that function back.
I feel bad for complaining when I know there are so many people with so many worse diseases out there, and no cures to be found. But at the same time I need to give weight to the fact that I temporarily share their struggle of not knowing when or if my body will ever function as it once did, and allow me to live the same life as I once did. It occupies a huge amount of my thoughts, and it would be a lie to say otherwise. Being healthy again is now my number one goal, that which everything else in my life revolves around.
To make matters worse, Lyme is a under-researched illness which has more misconceptions and myths attached to it than real truths. That means that most of what I hear from my doctor is not within the common knowledge of my peers, and cannot be easily fact-checked by a quick google search.
Even as I’m writing this now, I worry that in time my diagnosis will change and I’ll regret writing and publishing anything about this – that I’ll seem stupid or foolish for believing a diagnosis that has been confirmed by test results and a specialist’s clinical assessment. This level of uncertainty makes it really hard to share the ins and outs of the disease with others, and it adds a level of existential dread to an already physically debilitating disease.
I don’t exactly know what will come out of this, but I have more thoughts and feelings than I know what to do with, and my boyfriend has to go to work and stuff at some point. I thought it would be useful for me to keep a journal of what’s going on, and maybe some of you who have asked me how it’s going are interested in following along. Maybe some fellow Lyme sufferers will even find some support or company here.
I’m going to come back later with some more in-depth information on what exactly chronic Lyme is, and how it differs from acute Lyme, as well as the path that it took for me to get to this point, but for now I just wanted to get the ball rolling.