Lyme Disease Awareness Month: Looking Back

May is Lyme Disease awareness month. Within the Lyme community I see some people sharing posts with facts and others changing their profile pictures to the lime green banner. I’m often too timid to do either, as this sickness feels like a fragile little ball I hold in my hands, presented with the risk of cracking if its contents are passed into the wrong hands. Ethan and another friend called me a superhero this week, although I rarely feel that I confidently throw my lime green cape over my shoulders and embrace what the world gives each day. “_______ awareness month(s)” are weird. For the people that face the different diseases in those given months, it’s a toss between finally, a legit reason to post what I want people to be aware of all month! or ummm, why do I get only a month for people to realize what I wish they knew every day? 

It’s 2:40 am and I’ll admit that on some nights like this I spend time browsing Instagram for others who share their Lyme struggles. I’m really looking for success stories or new treatments, and maybe mainly for people who show me the world isn’t as huge as it seems. A disease is one of those things where only a swirling circle of shock sends solution right to your eyes so that you can’t help but see truth as you spin, and where having to be taken care of like a young child makes you mature about 10 or so years.

There are a lot of ways that people haven’t known to show up, that I haven’t known to show up before this. I look up family friends or school acquaintances that I’ve known have battled cancer or other types of diseases for several years, and I now cry at the depth in their eyes I missed before. There’s a small fire for their injustice that burns inside me, and I wonder why that hasn’t burned at that level before. Why do we cry with others only after we’ve cried for ourselves?

These are things that I wish would’ve happened for me, things I wish I would have jumped to do for the other brave soldiers out there.

1. Help them pay for their care. This doesn’t have to be through you giving to them, but maybe helping others give to them. For several autoimmune diseases, chances are those fighters are paying a looooooot of money out-of-pocket for their treatments, and a little help from a chunk of people could help a ton. Sure people have emergency funds most times, but no family really plans for a life-long or at least several year battle to hit, or at least desperately hopes for it never to. My doctors rang up our 30ish supplements during our first appointment but also shared that a stem cell transplant or blood transfusion would help speed things along. After I got diagnosed, I racked the internet for scholarship after scholarship to no avail, and then later did the same for a fellow Lymie. And when pain persists and new symptoms arise, new treatments and different therapies are tried with more desperation than choice. When you get thrown into a chronic sickness, you realize right away that a small donation could equal faster recovery. I wish my people would have organized a garage sale or a bake sale to help–even something small can pay for a month’s treatment and that is huge!
2. Use this month to do research. It is probably most beneficial to talk to the person with the disease for the most accurate information about their struggle specifically, but after a while of it feeling great to share about your invisible illness, it sometimes gets discouraging to see the repeated shocked look on peoples’ faces when they learn the severity of the disease, because it shows us just how invisible our illness is to others. If it’s a disease that your loved one faces, it’d be very comforting to them if you can help explain it when other people ask. Doing the research might include asking questions to the sick person about their actual disease, physical symptoms and emotional symptoms, without only relying on what they outwardly show you. One thing I love when family, friends, acquaintances and strangers ask me about my disease or how my treatment is going, is when Ethan jumps in and explains in detail the stages I’m at and what’s going on in my body when the forms of treatment enter. I like this because I’m exhausted from facing this disease every second, and depending on the day I might answer with detailed paragraphs of information because I’m excited someone wants to know more, or I’m already discouraged they won’t understand so it’s more of a “yeah it’s really hard” or a “well I was born with it and now my body is attacking itself every day so that’s fun.” This is also a way I see part of Ethan’s care, when he steps into the disease himself and learns all about it as I do.
3. Encourage, encourage, encourage. Please assume that this disease is taking a huge toll on the fighter’s emotional health. I have felt the depths of living in chronic pain, and have listened to scary stories of friends who have come close to giving up. When you live in chronic pain where your body chooses to give up, it’s really, really hard for your mind not to as well. I don’t think I can share with you the number of times I’ve screamed that I can’t move forward, especially knowing every next day for at least a while has the possibility of including more pain that I can ever handle. Your words mean something, and the absence of them means everything. And we will take the encouragement that much more to heart if we know you’re trying to understand the depth of the struggle first.
4. Ask some different questions. The basic question “how are you?” most times is responded to with a generic answer, regardless of who you are, yeah?–it seems more out of habit than actual truth. It often feels like you’ll be an immediate Debby-downer if you respond every time with “I’m awful, I have this going on and this pain and….” so the general “I’m fine” is way easier. One of my friends read an article on invisible illness a couple months ago and asked me a ton of different questions with how the contents related to my own personal struggle (sweet!). This got me to open up to share things I normally wouldn’t and hadn’t been asked, and went far in showing me she cared about the effect of this struggle. Often the normal activities, actions, or tasks you do throughout the day are a little different for us, and it helps to feel valued and noticed even with a “what was the funniest part in the tv episodes you watched today?” or “what was the main emotion you felt while laying in bed all day with a migraine?” It’s 4:06am right now, and whether you’re facing insomnia at the moment, vomitting for the next couple hours, searching for more pills for your tremors, needing to be carried to the bathroom, facing another hour of pain….gah, I’m so so sorry, and I hope that someone will ask you the deep questions tomorrow to remind you that they see you and want to feel it with you too. Questions=not feeling so invisible and not feeling so invisible=feeling a little bit of power under our wings.

 

I just finished my last year of school (fi.nal.ly.) and I can only say with confidence that it’s been a compilation of tiny gifts of God’s grace. It’s not the same as it would’ve been last year when I should’ve graduated; it’s a lot different waiting in line to walk with people you don’t really know, after you so thankfully secured tons of friendships with people in your class over the years. Buuuuuut, it’s a wonder this has happened at all, that life keeps moving forward despite everything trying to hold me back. God has become the God of my “shouldn’ts.” Everything that shouldn’t have been possible and shouldn’t have happened has been surprisingly accomplished, by no strength of my own.

So for those of you who are caged birds trapped within the confines of a sick body, I wish so much for you to experience this God who frees the souls of the hurt, broken, and bruised. I’d like to say that I’ve seen Him and heard Him in crazy ways each day, but I think I’ve seen Him most in His faithfulness of carrying me through another 24 hours, and now a whole other painful year with school on top of it. I see Him most in the looking back, which gives me proof I can look forward at all; in the nights I thought the pain would literally kill me, the visits where the doctor(s) told me Lyme disease wasn’t real, the discounting and misunderstanding of my journey by my loved ones, the blessing of Ethan’s fight next to me…God doesn’t hold us in His hands without an intention to take us places.

So this month, start here, use it to become aware of someone else’s struggle whatever it may be. There can’t be growth and comfort without a starting awareness, and I wish I would’ve learned more about my loved one’s struggles before I quickly shared my support. Show them they’re not only loved, but seen (cuz that’s the secret to loving them best!)