Friday, October 18, 2019
Home / Power Stories / Lyme Disease Stories / Maisie’s Fight Like a Girl Story (Lyme Disease)

Maisie’s Fight Like a Girl Story (Lyme Disease)

Maisie's Story (Lyme Disease) LRMany 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 chronic 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 twelve, 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 a twelve 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.

Maisie
New York
Submitted 10-7-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

4 comments

  1. Beautiful. Wow.

  2. Wow I wish you all the luck!!! I hope you find peace! You sound super tough,keep smiling!

  3. i have chronic lyme disease too. they found it in february of 2009 after it was mis diagnosed for 9 years. when i was 9 years old they told me i had childhood depression and thats why i was in so much pain that i couldn’t walk. you described how i have felt all these years. you said it perfectly. i feel the same way about everything. it really is an invisible disease and sometimes i wish people could see that i was sick so i wouldn’t have to pretend so much. its my life now. pretending. no one ever knows how truely horrible i feel. i always try to keep a smile on my face. its like you would never know. thank you so much for writing this.

  4. I too have Chronic Lymes Disease. When I was 14, I started getting very tired, very nauseous and vomiting all of the time and my joints hurt and I had very bad migraines. I had been to countless doctors thinking it was a stomach issue. Eventually my stomach stopped churning and my gallbladder stopped working and they had no idea why, they just put me on more meds. The doctors constantly thought I too was faking it and was just a hypochondriac, but my mother, my absolute best friend, knew that i for sure was not faking it and knew we yet again had to just go see another doctor until someone would finally believe me and finally figure out what was wrong. My mom worked at an animal hospital and one of her clients that she talked about me to came in one day and asked if I had ever been tested for Lymes Disease and recommended a doctor to see. So, we went to see the doctor and finally, someone knew what I was feeling, was able to tell me my symptoms before they could even come out of my mouth. Then, the blood results came and sure enough, I had Lymes Disease and Babesia. The doctor said I will never get rid of it because he had estimated by how long i’ve had the symptoms (2 years had lapsed) that I’d had it for those 2 years and now its too late, i’d always have the disease but reassured me after treatment with doxycycline I wouldn’t have to worry about it again. So, I took the doxycycline for 3 months and all was well and I went on my way. Then 8 years later, in 2009, I started getting heart palpitations, feeling like i was going to pass out. Went through countless tests and they checked my heart inside and out and found nothing. Then my mother was watching Dr. Oz and immediately called me and said to go get rechecked for my lymes. I fought with her on the phone for an hour saying this is nothing like my lymes and something else was wrong. So, after losing the battle with my mother, i went back to the doctor I had seen 8 years ago and sure enough, the devil came back. But this time it was different. This time it was much worse. I have been through 2 1/2 years of treatment with tons of oral antibiotics, two IV treatments and countless pain pills and patches later, and I just got the news 2 weeks ago i am finally back in remission. However, the pain still remains and the pain just keeps getting worse. I am now 26. Every morning when I wake up, before I even open my eyes, the pain in my joints and back hits me like a ton of bricks. I can’t even stretch because my joints are so painful and stiff. But, I still get up, shower, take my dog out and go to work. My lymes doctor now has just referred me to a pain management doctor and thats it. However, I am not convinced that the lymes is not going to rear its ugly head again, or worse, that I am still co-infected with something else. The pain is just so severe, I dont even know what to do anymore. I used to thank my lucky stars every morning that with having lymes for so long, I am still able to get up and go to work and put a smile on my face and pretend like nothing is wrong even though i’m screaming in pain inside everytime i take a step. I just want you to know you are in no way fighting alone. I know the pain and I know all about hiding it. So many people when they find out what I go through say the same thing, “Well you look fine to me”. That is such a horrible thing but a very necessary thing. I have acted for so long I do’nt know how to show pain anymore so when i see doctors, they don’t think i could possibly be in the pain that I am really in. That is my ultimate struggle. But keep fighting, I know one day this WILL get better. 🙂

Leave a Reply

Your email address will not be published. Required fields are marked *