Lymenaide has shared PSA of Katerina Graham, Kayla Ewell and Candice Accola to help spreading the word out about this disease. Follow @lymenaide for updates about their campaign and check out their website for more information about Lyme disease and how you can help. Make sure to spread the word out!
Please help by DONATING TO PAINT MAY LYME GREEN and participating in awareness activities this May!
Wow, go Lymenaide.
I’ve been seeing more and more information lately online that is directed to the family and friends of the chronically ill, like those of us with Lyme disease. It really has me thinking….because earlier today I had my own message for family and friends, and the more I thought about it the more I realized they couldn’t handle hearing what I had to say, at least not in the way I meant it.
One of my new favorite blogs to read is Infectious Optimism. If you haven’t checked it out please click on the blog and read it. Today I read a post of what would you tell your family and friends? What I found interesting was so much of what was said were things that these people could not say to their families and friends directly. Candice even mentions that the things she has written have been for others, not for her own family and friends to read. It got me thinking and I realized how willing I am to share (or complain about?) my Lyme disease journey with total strangers, it’s those closest to us that it’s the hardest to share with.
So I sat down and I wrote a few things. While some of the things may not be what you want to read, it’s important to know it’s what is going on in my mind…and what goes on in the minds of so many of us. We can tell each other when we have these feelings, because we understand. But it is very difficult to share with our loved ones who don’t understand. That leads me to point #1.
1. You do not understand what I’m going through, unless you are going through it too. Please do not compare my Lyme disease to whatever ails you. While we each struggle with our own personal hell with whatever we deal with, I can guarantee you that you do not know what I’m going through. I appreciate you trying to understand, but you can’t, and you won’t, unless you get this sick. (And I think I’ve made it pretty clear this Lyme Disease Awareness Month that I’m not letting any of you get this sick!) You don’t want to understand what it’s like.
2. There are days I want to die. I’ve yet to talk to a “Lymie” who hasn’t considered suicide as an option. But we can’t talk about that with anyone, because it sends everyone into a tizzy. (I want extra points for using the word tizzy while discussing suicide). It’s not that we are suicidal, it’s that we fear it may be the only relief we will ever get. I am now beginning my second year with the struggle of fighting this disease. I will gladly admit there have been countless times I wished I had gotten a different disease. One with a death sentence would have been fine, because it would have meant an end to the suffering. Those of us with Lyme don’t know if we will ever find an end to what we go through on a daily basis. We hope to God and fight like hell that we will find an end to it, but the reality is that there is no expiration date on our infections. Think about the worst flu you’ve ever had, and if you’d be willing to live with that EVERY DAY of your life, indefinitely. The worst flu I’ve ever had pales in comparison to what Lyme disease is like. So really think what it is like to wake up and face that reality as your life.
3. Lyme disease ruins us. No more explanation is needed. It literally ruins us. Our bodies, our minds, our lives. It takes our careers away, our livelihoods. We are left to depend on the kind souls that surround us to support and take care of us. And what do people say when they realize this? “At least you still have your life!” To those people, please see #2 above.
4. Hope is what keeps many of us going, but it’s not enough. Please understand no matter how hopeful I am for a full recovery, to get my life back and have the true Eric out and about again, it doesn’t change the fact of where I am today, in the right now. Yes, I need to have hope and believe I can get better and do all I can to fight…but please understand that right now, at this very moment…hope is a far off distant thing, I need to deal with the pain going through my body at this very moment. I need to grieve for what this disease has taken from me. What it has taken from my loved ones (yes, I’m talking about myself…whether they choose to believe it or not I am a gift to their lives!) I need to be okay with feeling the here and now, and I need you to be okay with it too. It’s part of the process…I understand if it is too much for you, so please walk away and come back later. But do not take the here and now away from me, because it is all I know. No amount of hoping is going to take away what I’m facing at this moment.
4. With Lyme disease, we make mistakes with things…like making a numbered list on a website (if I were to pull something off the top of my mind). Yes, you will notice my numerical order is messed up on this “list”. I left it on purpose. It’s been a misconception that Lyme disease only effects your joints, your knees…you know, typical aches and pains type of stuff. Anyone who has had it, can attest to the damage it can do to your brain. I’ve read many things, from the bacteria withholds oxygen to your brain to the bacteria messes up the circuitry…I don’t know how it does it, but the Lyme infection does mess with the mind. It does not however make us stupid. Yes, 50% of the time after I fill the cats water dish I try to put the dish in the fridge instead of on the floor. That does not change the fact that I am an intelligent person, who still has the same thoughts and ideas I did before Lyme. But some days it is harder to find those thoughts and ideas than others. But again, please know that Lyme disease has not made me an idiot (any more than I was pre-Lyme, which depending on who you ask will vary, please start by asking my high school assistant librarian…she’ll be the first to tell you I am NOT an idiot, she’s also the reason I got out of so much detention in high school, but my mind wanders…)
5. Our futures are uncertain. It takes most of us a while to accept that fact. But when we do, please do no tell us what the future will hold. Don’t let us dwell on the possibilities of course, but realize that our lives are on the line here, and we have to have contigency plans. Many of us don’t know from one day to the next if we’ll be able to walk, let alone talk or have an income. Please don’t assume it’s negativity when we are preparing for worst case scenario, even while fighting for the best case scenario. Again, it’s part of the process for us.
6. Let us cry. It’s important. Let us laugh. It’s important. Let us love. It’s important. Love us back. It’s important. Let us scream. It’s important.
To read more from Candice’s blog post on Infectious Optimism Click Here. I strongly suggest you become a follower of hers (not the kind of followers who’d drink funny Kool Aid or anything, but at least what she writes).
I could make a list a mile long of the things we wish we could tell our famly and friends when we become chronically ill, but I’ve chosen a few that I feel are important, from my own life as well as my conversations with other Lymies over the past year. I hope after reading this you will at least know to ask someone you love who suffers from Lyme disease what they wish they could tell you…you’d be surprised what they may just tell you.
From Infectious Optimism:
I posed a question: What is one thing that you wish your family and friends understood about your disease and how it has affected your daily life?
“I wish they understood the isolation that Lyme brings. If they did, I think they would reach out more and maybe I wouldn’t feel so alone on this journey. I wish they would believe me when I say that I am sick. It’s exhausting spending the time and energy trying to convince everyone when I need to use that energy to get well. If I had a recognizable disease like cancer, I bet things would be different.”
“What I want my family and friends to know is that just because I’m walking and talking doesn’t mean I’m here or “alive” (I get this a lot). That I now look at the world through a small lens…and how the pain we ALL share whether from family, medical community, spouses, people unwilling to acknowledge us, to the disease itself is simply unacceptable. ”
“I wish my friends and family would understand that just because I put a smile on my face and attend a picnic, a birthday party, or a holiday event doesn’t mean I’m not in pain, tired, or feeling drained from my illness. I’ve seen many of my friends do marathons or give money for Cancer and other illnesses, but for every Lyme event that I’ve even asked them to attend or even support they can’t seem to give an inch.”
“I wish my friends and family would accept that they really don’t know what this feels like. I wish they would stop comparing it to anything they’ve felt. They forget that I felt ‘normal’ once, and I wish they’d trust me when I say this is far, far beyond that. If it makes sense, I wish they’d understand that they don’t understand what it’s like to have a neurological infectious disease.” -Anonymous
“I wish my family could see “me”, not the me that is the reflection in the mirror but the me inside. The disease has created different layers of masks. The mask that everyone sees is the “fake smile” mask. The part of me that tells everyone “I’m ok” and “I feel fine”, where they know I’m sick but they don’t comprehend how much of an acting role my life is. The next layer is the mask of “reality”, the mask that shows what I feel and that only I can truly see…the layer I wish other people understood. Then there is the “glimmer of hope” mask that symbolizes me before I got sick…That’s the mask you have to focus on to be able to bear wearing the other mask on top. It’s the one that you keep in your heart and every once in a while when the other two masks get a tiny crack in them that one shines through. It’s not that I want my family to feel what I go through, I’m no torturer, I just wish they could still see the real me and not just the diseased me because beneath the pain and suffering the “real me” is still in there.“