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The Loss That Came With Lyme Disease

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Loss is one of the few words I keep coming back to when I think about my journey with Lyme disease and co-infections. Loss, anger and grief. Three emotions that I have truly experienced in-depth since being diagnosed. These are also three feelings that I never anticipated or expected to sense so strongly.

When I was first diagnosed, I never anticipated that I’d lose as much as I did. I also never expected my journey to be nearly as long as it has been and continues to be. Within the first three months of me being sick, I quickly lost my ability to drive, work, and function as an independent woman in their late 20s. Overnight I became completely dependent on my family to make sure that I got out of bed everyday, ate, took my medication and maintained my household. They constantly made sure that I was well taken care of and that, when I had energy, I was showering on a semi-normal basis. My mom joined me at every doctor’s appointment and advocated for me when I was unable to. At the time, I had begun to experience major cognitive dysfunction. I had memory loss, was unable to read, had trouble with word recall, wasn’t able to form proper sentences and my speech was profoundly affected. In the blink of an eye I was completely reliant on my family to keep me alive day to day.

I naively thought that this was all the loss that I would endure, yet it had only just begun. As I was losing these things one by one, I was also losing almost all of the people I had considered close friends and family. I was quickly accused of making things up, not being there for my friends, being selfish, paranoid and being too reliant on my family. I was asked if I was going to be put on chemo and when I said no, I was quickly dismissed as “not being sick enough.”

My major symptoms began around the time I was in a friend’s wedding, and by the time their first month anniversary rolled around, I had pretty much lost my entire support system. Ironically I was so sick at the time, I didn’t know what to be more upset about, the fact that I had to sell my car, that I wasn’t going back to my beloved job anytime soon, or that I was completely and utterly alone in this battle.

I was ignorant enough to believe that it would stop there. What most people don’t realize is that it doesn’t necessarily end. As time goes on, you still continue to experience loss, but it also starts to manifest into anger and grief. I have experienced countless dark days where I’ve had a complete loss of any hope, and all I want to do is give up. Those days are usually followed by a day of sheer rage or grief. Anger is the one emotion that I haven’t been able to fully set free and accept as it is.

Anger is a brutal emotion to experience, it is misunderstood and an emotion that most find very threatening. If I cried in a corner, I’d probably be more understood than I am now. For a long time I was furious at myself for expecting my friends and family members to remain in contact with me, for expecting them to be there and to at least acknowledge my existence with a simple text. I am learning to let go, but I have resented so many people for doubting me and for (I feel) abandoning me when I needed them most.

On top of that, I am enraged with myself that I am not better. I have done everything my doctors have asked of me, and more. I religiously stuck to my strict medication schedule regardless of how awful it made me feel. I went to my infusion center every week for 16 months straight to take a three-fourths inch needle to the chest so I could treat as aggressively as possible. I have tried alternative treatments and consulted an endless number of doctors. It always makes me even more furious when I look on lovely social media and get that punch to the face that someone is enjoying a vacation that’s on my bucket list. I theoretically just paid for that same vacation, I just didn’t get to go on it, it went straight to my medical expenses.

The gift is that this anger and loss has made me truly understand what suffering is. I now understand suffering and pain in a way that I never thought humanly possible. I value my family and genuine friendships in a way that most never experience. These amazing human beings are my “ride or dies,” and both of us know it. I can’t wait to come out of this on the other side, I have not a shred of doubt in my mind that it will take a lot to stop me when I do. This has been my own personal battle and lonely hell. I can handle being alone, and I am strong enough to deal with and get through the darkest days. I have also finally learned to voice what I’m feeling and have become more transparent.

The article's writer, smiling at the camera.

I have developed a strong, unbreakable support system of friends who are all dealing with these diseases and sharing their stories on Instagram. Thanks to them, they have taught me what true friendship is and I can confidently say that I have gained lifelong friends. I have been able to voice my anger, loss and grieving through this channel, and there is always someone who understands and can relate on level that only someone who has been through this can.

I wouldn’t wish this battle on my worst enemy, and frankly at this moment in time, I don’t believe in enemies. It simply takes too much energy to hate someone, it’s easier to just ignore them and live your life. I will say though, that this journey has given me more gifts and lessons than I am even consciously aware of, and for that, I am eternally grateful.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “HOME” to 741-741. Head here for a list of crisis centers around the world.

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Thinkstock Image By: ViktorCap

Originally published: July 13, 2017
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