Behind the Smile- My Story.

Many people have facades. Facades can be a means of preservation. A kind of armor that no one can penetrate. A shield that keeps others from knowing too much about you. With this armor on, you can pick and choose what or whom the outside world perceives of you. It can also be lethal.

 

I dedicated the past year to acting. Acting like this strange, bizarre new world of living with Lyme Disease was standard. Acting like, I’d expected this my whole life, acting like I wasn’t bothered in the slightest that overnight my life as I’d known it, stopped. But still I never went anywhere or did anything without a smile.

 

When I was eleven, I was diagnosed with Systemic Juvenile Rheumatoid Arthritis. For weeks I’d had, spiking fevers, crippling bilateral joint pain and swelling, and a mysterious rash that covered me head to toe. At that point I’d never been more afraid of anything in my life. My body was attacking itself and I was left with no control, as simply a spectator. I was put on multiple drugs to treat the disease; prednisone, humira, anakinra, voltaren, thalidomide, methotrexate. None of it worked.

I was an eleven year old girl stuck in bed, frozen in a state of sickness. I caught glimpses of normal life through my peers. I knew this wasn’t normal. I knew being this sick for this long was weird and I could only imagine what other people thought. Some said I was faking to get out of school, others were positive I couldn’t have arthritis because only older people were affected. But this had become my normal. It had become standard to take a hot epsom bath at 3 AM, and to keep a microwave in my room so I could heat up hot packs for my joints, or have four icepacks on my body at one time.

 

My life had become a war against this disease that I was determined to win. My only objective, my only goal was to get better, to stay ahead of the pain and not let it define me. Not let the pain become my life. When pain meds weren’t enough, I tried acupuncture, bath soaks, paraffin wax dips, hot packs, cold packs, homeopathic herbs, crystals, anything to have a life again. Why wasn’t I getting better? Because I didn’t have Systemic Juvenile Rheumatoid Arthritis, I was misdiagnosed. I had Lyme Disease. Which was only getting worse and aggravated by the RA treatment. This mystery disease wrongly labeled RA was in remission for almost nine years, until 2009.

 

In October of 2009 I came home feeling different, just off. I was always terrified that I’d push myself, that just by staying up late, or going to a party for two hours that I’d be done. What I thought was RA would come back, and I’d only have myself to blame for overexertion. This was a different feeling though, I felt like I had the flu. This overall crummy feeling lasted for 3 months until I finally couldn’t power through anymore, I was bedridden. I woke up on January, 1 2010 and knew that whatever this was, it wasn’t going away quietly, not without a fight. This is when my real battle with Lyme started, the day I was diagnosed.

 

The month of January was a blur, I was in bed 24/7 only getting up to go to various doctors. I was too tired to sit up. Too weak to venture downstairs. I remember after one week passed, I thought, “Its been seven days now, this couldn’t possibly last much longer. I’ll be better by Monday.” That week turned into months and I wasn’t improving.

Friends came to visit me once or twice, always saying things like,

“But you don’t look sick!” and,

“Well you seem great to me!”

This was the trap I’d created for myself. I never wanted anyone to feel uncomfortable around me. I never wanted anyone to sense how bad I felt, or to honestly know how miserable I was. Because to me it was both embarrassing, and impossible to quit the act. If people came over or called me on the phone, I had to rally, I couldn’t possibly tell them the truth, “Hi, I’m sorry I’d love to talk, but I feel like I’m about to puke and I feel a migraine coming on.”

 

My exterior was perfect. If you saw me, you wouldn’t think twice. You wouldn’t know I was in too much pain to choose the stairs over the elevator. Or that, for the past two hours I’d been fighting nausea, always staying close to a bathroom. I’d become an actress. And the act was a lie.

 

I had created an ironic mess.  I know now that you can not assume that everyone you encounter knows your story, your disease, or your extreme pain, solely based on the fact that you live and breath your illness.

 

I desperately wanted people to believe how horribly sick I was, but for the life of me, I wouldn’t show it. I wasn’t being honest. Only my family knew how miserable I was, and I even hid it from them. I was isolated from the world. Laying in bed, watching old friends finish college, go to parties, and take everything for granted. I had become so appreciative of my healthy days, that I couldn’t afford to take anything for granted, least of all my health.

 

I am invisibly sick. Lyme is nasty, but you can’t see it. And this is what is most frustrating. I wish I had something more dramatic to show for the hell I’ve been through. I wish I had solid, tangible proof that I’m as sick as I am, that I could hand it to anyone skeptical. I hope and pray that one day Lyme will not be so controversial. That Lyme patients won’t have to fight tooth and nail just to get adequate treatment.

 

All I can say is, I’ve been in bed for an entire year now. I’ve had echocardiograms, EKGS, 200+ blood tests, X-rays of bones I broke just by carrying a bag, surgeries, I’ve had MRI’s, spinal taps, a PICC line inserted into my vein and threaded to my heart (twice). This year is one I’ll never forget. I learned lessons that I’ll be forever grateful for. I’ve learned how fragile life is. I now appreciate everything I used to have. I’ve learned that despite what I used to think, I am strong. I’ve learned that those who stand by you when no one else will, are the only ones you should keep in your life. And I’ve learned to stop acting. Living with Lyme is like climbing a treacherous mountain. You take the right pills, you follow the right steps you might make an ounce of progress and take the next step in healing. But you’re scared because getting to the top means there’s the risk of falling again.

 

As the new year is rapidly approaching, my resolution is to quit the acting. I am sick. I won’t always be this way, but this period of my life is tough and I’m over being ashamed. If I can’t be honest about how I feel around people, then I shouldn’t be around them.

 

I was hiding behind the smile. I wasn’t as happy, and carefree. Behind the smile, I’m at war with a disease. I’m exhausted, I ache, I’m clinging to normalcy in the wake of chronic illness, I feel like sleeping for the next three days, and I no longer want to eat.

 

The smiling girl was lying, filled with fear and embarrassed. If you believed her, you were wrong.

 

 

 

 

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About Lyme Chick

Lyme Disease advocate/warrior still learning about Lyme treatments/recovery and wishing to inform, support, and commiserate with others along the way.
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9 Responses to Behind the Smile- My Story.

  1. Ashley van Tol says:

    It’s so hard when you have even yourself fooled by the facade. Thanks for sharing and reminding us all to be honest with ourselves about our situation.

  2. J says:

    Maisie,

    Just as you were relapsing I was nearing a year after my diagnosis of Lyme (following ten years of misdiagnosis) had turned my life and the lives of my family upside down. I still lie and say I’m okay sometimes when I’m not. Sometimes to spare someone worry, sometimes just because getting into the particulars with a friend passively asking how I’ve been just seems unnecessarily overwhelming. Sometimes I’ll say too much about my health and see the eyes of the person I’m talking to glaze over. In any case, I feel guilty.

    Having Lyme has been both weird and eye-opening, inspiring and cruel. It is what it is and like anything else in my life I feel most comfortable only sharing the details with those who show me over and over again they can handle the truth – for the sake of my own sanity…and theirs.

    You are so brave and honest, Maisie…I hope to be your friend for a long time to come. Keep hanging in there, girl…there are those of us who know how difficult it is.

  3. Jo-Ann says:

    Maisie,
    You are braver and stronger than most women. I admire your strength everyday. I am a better person for knowing you and grateful that we found each other through this terrible disease.

  4. Lyme Chick says:

    Thank you so much, Ashley, Jo-Ann and J! You are all so strong, brave and admiral. And I’M lucky to know YOU all. Thank you for reading my story. I hope it inspired you in some way.

    Love always,
    Maisie

  5. Angela Lewis says:

    Lyme Chick,
    My daughter was 11 yrs. old when she was diagnosed with fibromyalgia. She was almost 19 when diagnosed with Lyme(by a doc. that follows ILADS). She went for about 18 months (give or take a couple of months) on antiobiotics. Nothing seemed to really work for her so she is going to an alternative doc. now. Only been doing new treatment for 5 weeks, with one week no IV’S. She seems to be a little bit better. I hope this will work for her and she won’t have to go back to the antibiotics. Just had to go another route at this time. My daughter, Amanda, could relate to all you have been through. No one can understand unless they walk in your shoes. Hope all goes well for you.

  6. Lyme Chick says:

    Hi Angela!
    Your daughter and I do sound like we have remarkably similar stories!
    I understand trying all possible routes to beat this hellacious disease.

    Please tell Amanda that I’d be more than happy to talk to her, as it seems we could understand each other’s situation.

    My email is: LymeChicky@gmail.com if she wants to talk or has any questions! Lots of love, Merry Christmas!

    XOXO

  7. Beth says:

    this made me cry. I am going to make this my New Year’s resolution too. I have been on antibiotics for almost a year and a half. reading this was like reading a chapter of my life.
    I am a dancer, I do ballet and I have to act like I’m ok throughout and entire 3.5 hr class because I don’t want people to know how much I hurt or how sick I feel. Being a dancer with Lyme is a challenge and I have days where I just want to give up, but I don’t want this disease to take over and control my life, I just wont let it happen, I can’t let it happen. so I wear a smile on my face every class, every performance and everywhere I go because I just don’t want people to know. I am 17 years old, diagnosed at 16, told by a doctor at 15 that I would have to live with the problems I have for the rest of my life, I’m not about to let that happen.

    Thank you for doing this blog, it really helps encourage those who have Lyme, you can’t fully understand unless you are going or have gone through it yourself.

  8. Josephine says:

    I am suffering w/pain and everyone tells me I look good. They think I’m a hypochondtriac or Munchausen. When I have migraines, I can’t get out of bed. Feels like someone hit me in the head w/a metal baseball bat. It is crippling. But I look good.

  9. Terre Grossman says:

    Hi M,

    I have had arthritis from undiagnosed Lyme Disease that has stopped progressing but will never be totally cured. I hope you’re feeling better and just sayin’ how beautiful and cool you are to help others with your story..Let’s hope we see better therapy and can get rid of those little monsters forever.

    We love you ..xoxoTerre

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