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:
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.