*Originally published 5/7/19*
7 years. I’ve been sick for 7 years. That’s 1/3 of my life. 1/3 of my life spent in doctors’ offices, taking medicines and being in pain. I know I’m over-do for a life update (bad? but? it’ll be coming in the next few days), but since it’s Lyme Disease Awareness Month and my lyme-iversary (the irony), I thought I’d share 7 things that I’ve learned through these 7 years with Lyme.
Our medical system is a hot mess.
This was probably one of the first lessons I learned, and the hardest to grasp. In our society, we are taught to trust that certain people will help us, like police and doctors. However, when you have Chronic Lyme Disease, some doctors become the ones who hurt you the most. Due to the controversy surrounding Lyme disease—some say Chronic Lyme doesn’t exist—finding doctors who believe you, and can treat you, is a trying task. Which leads to my next lesson.
Be your own advocate.
When people (including medical professionals) don’t know much about your illness, or worse, don’t believe in it, you quickly learn you have to become your own advocate. You have to research. You have to tell people what is going on and what you need. You have to fight for your life.
Find your people and don’t let go.
Advocating for yourself can get hard when you are so sick you can’t remember what you are doing, let alone keep your eyes open. That is why it is so important to find your people. Having a good support system is what I believe is one of the most important parts of making it through this journey. I would not be here without my family and friends. The sacrifices and things they have had to do for me over the last 7 years are nuts—from the obscene amount of money spent (here’s looking at you $63,000 PICC line), to literally carrying me when I am too weak or paralyzed, and holding me while I have my ~monthly~ breakdowns. Sure I’ve lost people over the years, but that just made it more clear who is really in my corner. I am so grateful to have all of you on this journey with me. I love you.
Listen to your body.
I have been sick for 7 years and I still struggle with remembering this lesson. One of the hardest things to grasp when you get sick is that you can’t do what you once can, and this gets even harder to remember when you start to feel better. One day I will be able to go 3 miles on my elliptical and then lift weights for over an hour and feel great. Then another day I can’t even go a mile and weights are out of the question. As you can imagine, this gets very frustrating. A year ago, I would have kept pushing myself, even as my body was screaming “NO!” but now, I’ve learned to listen to my body. The only person I am hurting by ignoring my body’s message is myself. I always tell people “your health is the most important,” so doing and giving my body what it needs has to become top priority in this healing process.
No Journey is the same.
This one is another tough one. Since the Lyme bacteria is so smart (to learn more about it I recommend watching Under Our Skin) it can impact pretty much every system in the body. It also can affect people differently. So what works for one person, may not work on you. For instance, I have a Lymie friend who sees the same doctor as me right now. There is one medicine that I have to take or else my anxiety will be off the charts, but if she takes it she gets anxiety. Some people swear by stem cell treatment, while others say bee venom therapy helped them. My mom heard someone say “once you’ve seen one Lyme patient, you’ve seen one Lyme patient,” and that is so true. No journey is the same, so don’t compare yours to another, just buckle up and get ready for a long and bumpy ride.
There is a great big world out there.
I got sick when I was 14 years old. I was an annoying teenage girl obsessed over boys and looks—I quickly learned these things don’t matter. Lyme forced me to grow up really fast. It forced me to see the cruelness in the world. I watched people lose their livelihoods just to pay for treatment, in order to stay alive. I watched people die from Lyme disease. I have seen that there are hundreds of thousands of people out there just fighting to stay alive, and I have been (and always will be) one of them. Lyme disease taught me that there are more important things to worry about then just yourself and your small little world, and for that I am grateful.
Celebrate the little things.
This one is super important. As you get further and further into this journey, it can be hard to see the silver linings. That is why it is so important to celebrate the “small” things. I can remember the first time I drove to the top of my street after being paralyzed—it wasn’t a 3 hour drive, but we still celebrated. Or the first time I said “my head doesn’t hurt”—I had a headache for a good 5 years. While these things may not be winning a Nobel Prize or an Oscar, they are little glimpses that everything will be okay, and that is something everyone needs to celebrate.
And just for good measure, here is a bonus lesson I learned:
Pajamas are not just a bedtime attire.
The amount of times I have left the house in pajamas in the last 7 years is most definitely higher than the times I wore “normal’ clothes. This lesson came from a few of the above lessons combined. Once I realized there are more important things out there, I found that if I feel well enough to leave my house, I am going and not giving a damn about what I look like—leaving the house is a huge accomplishment and if it’s going to be in my footie pajamas, then that is fine with me!
7 years, 7 lessons. Hopefully next year I won’t be celebrating this anniversary, but if I am, I’m sure Lyme will have taught me something new. While I wouldn’t wish this illness on anyone, I am grateful for the lessons Lyme has taught me and the person it is shaping me out to be.
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