what it’s really like

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This is the “in bed all day, don’t bother wearing contacts or make-up (or brushing your teeth?), and your bed covered in medicine bottles” picture. Lyme is an invisible disease, so we look pretty normal when we see you. But this is the real picture.

My dear wonderful loved ones of Lymies, this is a complicated disease we’re dealing with. It’s hard for your Lymie to explain, and it’s difficult to understand from the waiting room.

There are many things that your Lymie probably wants to tell you, but may have difficulty explaining. I’d like to shed some light today on what it’s like to live with this disease (or at least what it’s like for me). I’m only going to give you the basics, but hopefully it’ll help start a conversation between you and your Lymie. I imagine that conversation going something like, “I’ve heard another Lymie say that she feels this way______… Is that your experience too?”

Let’s get started. Here are some of my initial thoughts about what life is like:

  1. It’s traumatic. Every day is full of pain and debilitating problems. Your body can be okay(ish) one moment and then the next you can’t walk. You may get lost while driving in your own neighborhood because your brain literally stops working. You may skip meals because it’s too painful to walk 10 ft to the fridge. You may sit in the dark most days because of migraines. You may only sleep 2 hours each night. You may throw up so much that you pull a muscle. Burning, stabbing, piercing, shooting pain. Diarrhea. Air hunger. Fatigue. Memory loss. This is daily stuff. This is the bare minimum. Seizures, heart problems, brain cysts, allergic reactions, surgeries are the very likely add-ons. It’s a lot to deal with. The bottom line is this: while you may get used to them being sick, they don’t get used to being sick. The trauma is new every day.
  2. You can’t keep up. All of the above craziness ensures you will forget things, have to “rain check” important plans, likely have to stop working, and will spend 95% of your life in bed or on the couch. You’ve never had so much free time, and yet you have the physical energy and emotional capacity for next to nothing.
  3. You grieve over the loss of life. It isn’t just the physical trauma, it’s all the things in your heart, all the people you miss… that leads to continual grieving. The grieving becomes less over time, and you may learn how to cope with it… But I think to some extent it is always there. It’s disappointing to miss weddings, birthdays, be in bed on vacation, put off your dreams. It is wearying, and there’s lots of crying throughout the years.
  4. It’s isolating. Being stuck in bed so much makes you an easy target for isolation. Many people feel alone. Many feel forgotten. Unless you’re able to really fight for relationships, and in return your friends decide to also fight for the relationship… Relationships will drift apart naturally to the point where there are few people left. It’s so sad. I’m of the opinion that the emotional, heart pain of being sick is worse than the physical pain.
  5. You look normal. Lyme fits into the category of being an “invisible disease.” There’s a lot going on that you can’t see. Most of the time, you only see your Lymie’s pain if they let you see their pain. I often wish I looked how I feel. It would make life a lot easier.
  6. It is tiresome having a disease that is not well-known. Lyme is still at its beginning with research, treatment, and up-to-date awareness. Even most doctors aren’t read-up on the recent information of how wide-spread and difficult to treat this disease is.  That basically means 3 things: 1) Your Lymie will have to scour medical journals and books to understand treatment options. They have to become experts and diligent with their care, because so few doctors even know what to do with a Lyme patient. 2) Your Lymie will constantly have to educate their own doctors and run the common risk of being told “it’s all in your head” or labeled as “simply looking for attention”.  3) Because it is such a confusing, little-known disease, it’s not easily understood by loved ones.  There’s no neat box to put “Lyme and co-infections” into. Basically, no one knows what to do with Lyme, and that’s tricky.
  7. It’s expensive. You can easily spend tens of thousands of dollars each year on doctor’s appointments, MRI’s, medicine, PICC lines, surgeries, and home health care. And that’s frustrating. It’s frustrating that in order to try to become slightly better, you and your family will sacrifice your savings and go into deep debt. It’s scary to spend that kind of money on something that may not help.
  8. You have to be your own advocate even when you have no “fight” left. You spend 1/2 of your energy keeping the hamster wheel of your medical journey going — fighting your insurance company, getting your doctor’s office to communicate with your insurance, staying on top of your pharmacy, and getting your home health care to communicate with your nurses. You have to pay close attention to your finances to make sure you weren’t over-charged. You have to be ever-mindful of the 5 different doses of meds and supplements you are taking each day (I’m estimating around 40 pills total). It’s a never-ending cycle where the sick person has to work tirelessly.
  9. The way you live is drastically different. When you are trying to plan your calendar, everything revolves around your doctors appointments, lab draws, therapy, infusions… You have to plan rest days into your week because you know the crash will come after doing errands the day before. You may leave a holiday party after 5 minutes because your body is crashing. You may drive all the way there just to turn around. You may not get out of bed all day except to crawl to the bathroom. Life is different. Life is SO different. When someone asks you, “What’s new?”… The response options are 1) to describe your current health stuff, or 2) to describe what happened to your “Grey’s Anatomy ‘friends'” that day.
  10. Sickness leaves you wide-open to fear and hopelessness. With all of the above things, life is constantly overwhelming. And it’s easy to come to conclusions that are hopeless, fearful, angry, cynical, etc. It’s difficult to think positively. It’s difficult to be cheerful when you feel like your life is a burning building where more and more things keep catching fire.
  11. You change. You inevitably become a different person. There is so much sorrow added to your life that you cannot help but change. Hopefully, you fight to be cheerful despite horrible circumstances. Hopefully you fight against bitterness. Hopefully you let your sorrow make you even more compassionate for others’ pain. But it is such a fight. It is such a fight to not let sickness define you. It is such a fight to learn how to live again. And through all of this good fighting… There is much added to you. Your character changes. What you think is important in life changes. You change.

That’s a snapshot of what it’s like. And not to be depressing, but that’s the extra light version. To fully explain what it’s like, we’d need a few hours and two boxes of tissues (one for me, one for you).

It’s just hard. It’s hard every day for your Lymie, which means, frankly, that your Lymie will be the most blessed, loved, comforted, understood:

  • By your continued presence in their lives.
  • By your grace for their sometimes (often) stinky attitudes.
  • By your reminders that they aren’t forgotten.
  • By your willingness to listen when they want to talk about the hard stuff.
  • By acknowledging that the little energy they can offer you is enough and appreciated.
  • By offering your help in whatever they may need.
  • By offering to pray for the areas in their life where they hurt.

Sickness drains a person in every way — physically, mentally, emotionally, spiritually, relationally, and financially (whew! Lots of ways). But their life can be considerably better simply by being known and loved right where they are, for who they are in that moment. That actually does so much for them.

They need to feel known. They need you to want to know what their life is like. They need their pain to be acknowledged, and they need your comfort.

I have this phrase rolling around in my head all the time, that I want to learn how to “be sick well”. My hope for you is that you learn how to “be WITH a sick person well”. That’s hard too. It takes a lot of patience, a lot of listening, a lot of grace on your part. But I promise, the end result is beautiful. I’ve experienced it! It spreads around compassion, love, and joy — enough for them and enough for you, too. There is such beauty in shoring each other up in our hard places.

Addendum: I do want to acknowledge that sick people don’t have the corner market on pain. Each person on earth experiences tremendous loss throughout their lifetimes, and we are all in need of the care I described above. As much as I encourage you to learn what it’s like to be a Lymie, I want to let you know that it is important to me to do the same for my loved ones. Share your own pain with the Lymie in your life. Chances are that they can relate in a small way (perhaps better than anyone else), and that they can extend the comfort and compassion you so need as well.

Let’s all be excellent at showing compassion. Let’s all be working at the things in life that really matter.

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7 comments

  1. laurabennet · January 23, 2016

    Thank you for you honesty and sharing your journey. I picture someone trudging through a snowstorm on the ridge of the highest peak. In a blizzard. It feels like death is imminent unless you keep trudging. What choice do you have? The conditions are relentless and seemingly hopeless. Alone, you can barely function, but if even one other person is on that journey with you, there is strength and hope in even the sharing of it. I can only understand in part, but at the worst of my past sick days spread over the few years, I think I was there. You are a courageous woman full of grace and faith. Inspiring even in you “bed” days! Sending big hugs. (Gentle ones since sometimes hugs can be painful, right?)

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    • K Albert · January 28, 2016

      Oh Laura, I can’t even tell you how grateful I am for your encouraging words. The picture you describe is so much how life can feel. I remember a distinct time when that picture was my reality, and Debbie told me, “You just have to keep fighting. You have to.” It wasn’t a scolding or uncompassionate tone. It was so empathetic, kind… It was “this is what we have to do now”. I am so sorry that you know this picture yourself. I wish we could spend some of our sick days together — on the couch, not talking necessarily — ust being together. Again, I’m so grateful for your too kind responses. It crazy blesses me. (And I’m sending a gentle hug back to you!)

      Liked by 1 person

      • laurabennet · February 7, 2016

        I’m so glad! And while I’ve been able to gain health, I do remember how those days feel. I pray for you and love your writing – both because you are a wonderful writer and because you are real, raw and honest with kindness, gentleness and grace. I’d love to spend some “couch” time with you too!

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  2. Pamela · January 28, 2016

    Although EVERYthing you have written about this has been so “spot-on”, Kayli, this depiction really got to me…and I’ve been sick longer than you’ve been alive! Ha!…funny and yet not so funny…
    You have so fully, yet graciously, captured what being chronically sick with any number of “tricky” illnesses means on a daily, even minute-by-minute basis…
    While I do not (still) understand how it is that hearing someone else so accurately portray those deep, private, difficult and painful personal realities brings so much healing comfort and validation, that is just what you have done here…
    Very well done…may what you have given here in comfort and help come back to bless you with comfort and help…

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    • K Albert · January 31, 2016

      Pamela, thank you. I’m deeply grateful for your words, and simply amazed and happy that this comforts you in any way. What I described is such a small snapshot… The stories you could tell…. The stories I could tell… There really are, like you said, so many deep, private, painful realities.
      And for me, at least, there is this tension when I go out in public between wanting to be “all there” mentally, physically, emotionally, so I use up all of my reserves to be cheerful, “normal”, think critically… Yet, I also know that it gives off the impression that I didn’t just have a seizure in the car five minutes before… So in the end, people don’t have a good picture. I’m still figuring out this tension.
      I wrote this post with other Lymies in mind, but as always, Jesus is turning it around for my good. Part of that “good” is most definitely receiving your kind and gracious words. I feel encouraged… the kind that sinks deep into your heart. So, I’m thankful to YOU. And again, I’m just so happy this blessed you. Hope your joints are surviving this rainy season.

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  3. Lisa Hess · March 22, 2016

    Somehow I was directed to your blog. Of course, I can’t remember how because of no short-term memory, but I’m glad I found you nonetheless. As I read this letter, tears began falling down my face because I felt like I was reading about me and what I’ve been dealing with for so long and still am and will still be for many months/years to come. You moved me so much that it freed my fears and gave me the courage to write just an abbreviated version of my chronic pain and Lyme Disease and it’s co-infections journey on my Facebook page with a link to you (I hope you don’t mind). I just felt that if you moved me in such a way, that your message deserved to be heard again and again. I already heard from one person who is forwarding to someone she knows who is also going through what we are. That being said, if I can help just one person, it is worth all the pain we suffer to know that we are not ALONE! Thank you so much. Sincerely, Lisa Hess

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    • K Albert · March 30, 2016

      Lisa, I can’t tell you how much your kind words mean to me.

      I am so deeply sorry that you could understand personally this post… because, of course, that means you are also living this traumatic, awful story as well. But, I am so happy that you felt a sense of relief, peace, and courage because of it.

      I feel exactly like you do… that if my story can help just one person, it would be worth it. I want you to know that you are my person — if all of this was to encourage you, then this is worth it. We are definitely not alone.

      Thank you also for sharing my blog with your friends on facebook. I very much hope that they read it, and can understand how to better love and support you.

      I really can’t say enough how special your words are to me. I’m grateful to have a new Lymie friend. I wish you the very best in your journey, and hope to keep in touch.

      Warmly,
      Kayli Albert

      Like

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