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Lyme Awareness Month, Day One: Five Lessons Learned from Lyme Disease

May is Lyme Awareness Month--a month dedicated to educating the public on all facets of Lyme disease and other tick-borne illnesses. We thank all of the patients, advocates, and Lyme organizations for their dedication in helping to spread the word and save lives. Here at LymeBrave Foundation, we're taking an unfiltered look at what it's like living with this chronic illness by opening up our journals and sharing the highs and lows of life with Lyme. Join us for our 2018 awareness campaign by helping to #shareyourstory. Contact us to find out how!

Editor's Note: The following appeared as a blog post on Susan's personal website, dated July 15, 2012--two months after her official diagnosis of Lyme disease.

So, it’s been awhile. Almost two months to the day, actually, since I’ve last written here. I think about writing all the time — there’s so much I want to say, so much I need to let out, so much I want to explain and inform and vent. There’s so much that I need to say, so much that I’ve been holding in…

Except, I just can’t find the words.

I promised myself when this all began that I would journal or blog every day, that I would chronicle this journey through Lyme Disease not just so that I and others can better understand this life-changing disease, but so that I would have an outlet for the very emotional trial that this has become. Writing has always been my catharsis, and this blog has been and will always remain the place where I am free to speak everything that hides in the secret spaces of my heart.

But I haven’t been writing. Instead, I’ve turned to my confidantes, my pillars of strength, my own personal superheroes: my family.

Instead, I’ve exchanged texts and phone calls with the friends who have become my angels. Instead, I’ve cried into Riley’s fur while holding him close, my saving grace.

There’s so much to this disease that I haven’t been able to share, things that I long to say, things that I still hold in because I don’t want to be a burden, because I don’t want to chase people away with the trappings of negativity that this disease lays bare. But the isolation and loneliness of Lyme is suffocating, and the solitude becomes its own disease that eats away at the soul.

And so I try to stay connected in other ways, to live vicariously through friends, to enjoy the life they’re living when I can’t yet enjoy my own. And I post bits of my own journey to Facebook and Twitter, knowing that I need that outlet, that connection to the outside world. At a time when I barely leave the house except for doctors appointments, to spend nights at my parents’ so they can take care of me when I can’t be alone, or the few hours I can make it into work, social media becomes that haven where, for just a little while, I can feel like I’ve become part of the world again.

It’s beginning to feel like the world is there, just around the corner, waiting for me.

I’m beginning to feel alive again. While I once feared I had become but a shell of someone who used to be, so severe had the pain and fatigue and fog become, I’m beginning to find the human underneath the symptoms again, the person and not the patient.

I’m beginning to understand the lessons this disease has been so gruelingly teaching me:

To stand up for and trust in yourself — you and you alone know your body. I was passed around from specialist to specialist for months, having been previously misdiagnosed numerous times for nearly fifteen years, before I began doing my own research, insisting on tests, and demanding follow-ups. With the many crazy (I mean, ridiculously bizarre) and often unrelated symptoms that this disease produces and that I was experiencing, I thought I was just being paranoid. And after dozens of trips to the doctors, I’m pretty sure they did, too. But I knew that there was something — something that just wasn’t adding up. So I read and I researched and I typed every symptom and search phrase into Google that I could think of in search of a cause.

And then, I found my miracle.

To recognize, pay attention to, and appreciate your limits — I push myself beyond what I’m physically and mentally capable of at the moment, wanting to “be normal” when I know right now I’m anything but. For some ridiculous reason, I feel this need to please everyone, to prove something — to myself and to others — to make sure that I don’t disappoint anyone or let anyone down. So I keep going, though I have nothing left to keep me going, trying to somehow show that I can do this, that I’m trying with everything I’ve got to get better and still hold my life together.

But then I push too far. Then the crash happens and I shut down and the downward spiral begins. I’ll spend the following days in inexplicable pain, barely able to walk, barely able to stay awake or focus for more than an hour at a time. And yet I keep thinking, if I can work just one more hour, if I can clean just one more dish, if I can walk just one more step…

But I can’t.

And it takes everything you have, all of your strength, not to let that stress, that feeling of failure and disappointment from yourself and from others — like you could be better and do better and should be better by now — destroy you.

To never apologize for an illness — it’s not something you choose or can control. And for anyone to think otherwise shows a lack of understanding and compassion on their part, not a failure on yours. I used to apologize for the inconvenience that this disease imparted on others, feeling bad about feeling so bad. I used to think, if only I could make them understand what it’s like...But I’m learning — oh, I’m not done learning — that maybe not everyone wants to understand, and maybe that’s not a reflection on me but, rather, on them.

Having a truly horrifying and debilitating disease disseminate throughout your body — working its way into your neurological and central nervous systems — isn’t something you would ever choose. Having it change your life — as you fight to save your life — isn’t something you can control.

Life happens. Health happens. And I’m learning that the only thing I should be worried about is this road to recovery.

To accept help — it’s not easy saying yes when help is offered. And it’s even harder asking for it when you need it. As someone who prides herself on being independent, this disease has been a huge awakening. It’s that pride that is one of my greatest flaws. I used to think that I was supposed to be some kind of superwoman — that I had to do everything on my own. I used to think that I could take on the world.

I knew, though, from the beginning, that I would never be able to fight this disease on my own. My family has been my greatest support and I’ve never hesitated to cry to them or ask them for help because I’ve always known that we’d always be there for each other — that’s what family does. That’s who my family is, through it all.

But with others, it felt different. As much as I love taking care of others, I never want to be a burden on anyone, and with all that I find I’m in need of now, I’ve felt that, somehow, that’s exactly what I’ve become. Unable to drive, unable to take care of my lawn and my house, unable to go out and be social, I’ve found myself appreciative of the willingness of family and friends to run errands for me, I’ve found myself thankful for neighbors who weed my garden (and tell me I’m an idiot for feeling bad for having them do so, see bullet point above), and I’ve found myself feeling closer than ever and forever grateful for those friends who, understanding the loneliness that a chronic disease imparts, call and Facebook and tweet and visit just to say hi, how are you doing, I’ve been thinking of you…

It’s these people who have stood by through this rough time, who encourage me and support me and show me what it means to be remembered and cared for, who remind me that love is a two-way street — that I can care for others, yes, but there are times when I need to be taken care of in return.

They remind me I’m not superwoman.

They remind me that I don’t have to be.

To never take anything for granted — Anything. Ever.

So I’m learning as I’m healing. I’m learning about myself, I’m learning about this disease, and I’m learning about and opening my eyes more to the world which surrounds me, a world in which I hope to become an active part again.

It’s there, on the horizon, waiting…

Until then, I’m still here.

In that space where the darkest days begin to feel like a memory and better days are still yet ahead, I’m finding hope.

I’m finding strength.

I’m finding my own salvation.

- - - Will you show the world you're LymeBrave and join us for our Lyme Awareness Month campaign? Contact us at to find out how you can help#shareyourstory!

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