Resolutions and Realizations: The Cost of Living with Lyme Disease

Well, it’s 2017. 2017! I wish there was a way to capitalize numbers. Let’s try this: TWO THOUSAND SEVENTEEN! How was that? Do you feel the impact of it? The newness of it? It’s that time of the year, the very beginning, when everything feels fresh. You get to do everything for the first time again; first cup of coffee of 2017, first shower of 2017, first hug, first car ride, first disappointment, first round of medications. For those of us who live with a chronic illness, today is perhaps just a tedious reminder that we now need to remember to write the date correctly, again, on all of the medical forms we fill out at various Doctor’s offices. It is just another day in the seemingly never ending wheel of days in which we wake up, take some meds, survive, take more meds, go to bed.

The truly magical part about this time of the year is that we can make ourselves believe, if we’re willing to, that we get to start with a clean slate again. We can look back on the past year with bittersweet thoughts, and look forward in anticipation of all the joy we hope it will bring. Humans are fickle like that. We can raise ourselves up as high as we possibly can in one moment and bury ourselves in guilt, regret, pain, and loss, etc. in the very next second. Don’t mourn the past, don’t even begin to mourn the future and the inevitable struggles you know it will bring. Accept it, flow with it. We should look forward with easy excitement because you do have a clean slate-if you want it.

One question that I get asked a lot from people who have reached out to me from this blog is “Does it ever get any better?” That’s a tough question to answer sincerely. It requires a great deal of thought and self-examination on my part. It requires me to assess what the cost of Lyme on my life has been–the cost of living with such a devastating disease. It has definitely taken its toll. Lyme doesn’t discriminate, it takes and it takes, and we keep living anyway—to paraphrase a Hamilton lyric.

To calculate the cost of living with Lyme I need to be honest with myself, vulnerable. As Brene Brown would say; “Vulnerability is not weakness, it is an act of courage” I need to open myself up to the fear and the pain, to the benign indifference of the last 5 years–the estimated amount of time in which I’ve struggled with this infuriating disease. I need to acknowledge the realizations that looking back on my struggle with this disease has brought me. Through the haze of Lyme, I came to see all of the things I have given up, all the things I have lost.

Perhaps the biggest thing I’ve learned during this experience is that things change because they need to, and that change can be for the best. You will not be able to maintain some of your relationships as they are in their current state. Some things will have to change, because you change, and it won’t always seem like change for the better. There was a period of time in my illness; I had decided not to pursue finishing my college degree due to the Lyme, I was living with and being supported by my parents and suddenly I found that my legs didn’t want to work anymore. I began using a cane to walk, or just not walking at all. This was months after my first seizure experience, yet very much in the midst of some heavy treatment. There were times when I couldn’t shower alone, times when I needed help going up and down stairs, times when I couldn’t prepare my own food. After one particular seizure experience, I also suffered from a concussion that kept me in a needy, child-like state for weeks. Due to the severe anxiety I was experiencing I was unable to connect with the outside world. I stopped communicating with friends, family members—I couldn’t do it. The idea of sending a simple text became this tremendously heavy task, to a degree that I felt oppressed by it, suffocated. I threw away social opportunities, potential job/volunteering opportunities, I turned my back on acquaintances who had-more or less-always been there for me, I refused to reach out and connect with some of my closest friends and family members, I turned inward and withdrew from my previous life. I felt awful about it.

Having a chronic disease can turn someone into an incredibly selfish person-deservedly so. Though in the midst of our personal woes we forget about the outside world, we have blinders on. Sometimes that is the price you pay. Not just the price you pay, but the price those who desperately care about you pay as well. A person in the dark abyss of chronic illness can lash out at the people closest to them. I realized sides of myself that I never wanted to know: I could be viciously unkind. Something for which I am incredibly remorseful. Some of that is unavoidable, though. I had gone from being an active, healthy, strange but content human being living my independent life to someone who needed to be coddled by my Mom, protected at every turn by my Dad, cared for, like a nurse, by my significant other. Do you know how that feels? It is embarrassing, demeaning. Yes, it is all done out of love, and I appreciate it more than I could every express, but that doesn’t mean it doesn’t still hurt. Struggling with a chronic illness is a deeply complex, personal, singular experience. One that is hard for others to understand when you are deep in the throes of it. It is easy to put people at arm’s length, and hard for those who are just trying to help.

So relationships change because they have to. You cannot go through experiences like this with those closest to you and submerge unscarred, and you can’t go backward to salvage what you had. You change-I know I certainly did-because we are human and we adapt for survival’s sake. I am a survivor. There were times in this illness when I 100% believed I would die, that I wouldn’t make it through the summer, or to the next weekend. Hundreds of times have I wished that I could just be hospitalized to feel safe and sane. To have that security blanket of constant care and observation from medical professionals who could save me if I needed saving-which I wholeheartedly believed I did need.

And now, that pesky question: “Does it ever get any better?” Of course it does. You will not come out of this the same person you were when it all started, but you will come out of it. Change is inevitable, and change can be good, great even, take solace in that fact. You will struggle, and it absolutely will not be easy, but you’ll survive because that’s what we do. As humans, we are survivors. You are a survivor. Reach out, ask for help, tell the people you love how much they mean to you, be your full self in every moment no matter how painful and revel in those beautiful moments of happiness and light that seep through the dark cloud of illness that surrounds you. It won’t always seem like it’s getting any better, but it will. Keep fighting.

The cost of living with Lyme on my life? Immense. Indescribable. Titanic. Yet I keep living because the only other option isn’t an appealing one. Life isn’t meant to be easy, and it certainly won’t always be fun, but it is what has made me who I am now and for that I am thankful. I am a better version of myself than before this all started–and I already thought I was pretty awesome. I have learned so much about the world, about myself, about people. Things that I never would have learned had this not been my lot in life. I have discovered passions I didn’t know I had, I now know what I want to go back to school for–what I want to do with my life. I now know and believe that even I, an awkward kid from Maine, can make in impact on people’s lives. That, in my own little way, I can change the world. And that, my friends, feels pretty amazing.

Of course, my story is not so different from many others’ struggles with chronic illness. In fact, my story has been easy, light, even, in comparison to some of the stories I’ve heard from the beautiful people that make up our community of chronic illness. Some of those stories will break your heart. But my story is mine. It is my tragic comedy and I own it.

I urge you all to take this new year in stride and enjoy being alive. Don’t bother with resolutions. To quote Danielle Doby: “To resolve means to find a solution to a problem. You are not a problem. The way you showed up for your life the last year was necessary for your growth. Now is a time to reflect. To learn. To create an intention, a positive call to shift, a spark of magic and manifestation rooted in self-love and backed with action.” Allow the realizations of your life to filter in and create the change you wish to see in yourself. Life is beautiful and so are you. Don’t suffer more than you need to, there is no reason for it. In this new year, find that spark of happiness, the things that make you, you, and smile because you’re still alive and 2017 can be whatever you want it to be.

Hannah Barry

About Hannah Barry

I am 25 years old. I was bit by a tick over 3 years ago, and have been battling suspected Lyme off and on since then.