As a writer, getting a feel for how people manage crisis is often best served by reading first hand accounts. After all, reading a diary by someone who lived during Civil War times will give a different insight than a history book written over a century later.
Earlier this week, I posted an interview with author Brandilyn Collins. Her novel, Over the Edge, centers around a woman who has been infected with Lyme Disease. Don’t forget, leave a comment on this blog this month to be eligible to win a copy of this novel and another great surprise!
A good friend of mine has dealt with Lyme Disease for twenty years. Today, she posts a first hand account of what it’s been like. Welcome, Kristen!
So, reality is, you don’t get superhuman powers when you’re bit by a tick. Instead, you get super crazy symptoms and doctors that don’t know what to think of you.
You tell them you are beyond tired and have major joint pain in your knees and hands, muscle weakness. They tell you to exercise more. You do. That makes you physically ill with vomiting and such. It makes the joint pain worse. You tell them exercise makes you sick and doesn’t help the tiredness. The doctor tells you you’re just depressed and prescribes something to help.
If you don’t take the prescribed pills, you’re told you’re rebellious. You look for a new doctor. The new doctor takes one look at you and says, “You look perfectly healthy, what are you doing here?” You reiterate your complaints as explained to the first doctor adding, “I’m having memory problems.” He says, “Everyone forgets things, that’s normal.”
You know it’s beyond “normal”.
You tell him you have chest pain and were diagnosed with Mitral Valve Prolapse. He listens and muffles a laugh, saying he can’t hear anything and alludes that you’re a hypochondriac.
So, you go on about lyfe, as best you can… trying to live “as if” you’re healthy.
Finally, a doctor puts the pieces together. You were rock climbing in Wisconsin? The symptoms came on soon after? A tick bite? A test confirms it: Lyme disease.
But you were treated for what was assumed to be Rheumatic Fever. That should have taken care of the Lyme disease. We’ll just give you one more week of a more powerful antibiotic and consider you cured.
Then, one day, you’re in class and you just don’t feel right. You head to the bathroom, get very sick in every way possible, clean up, and everything goes fuzzy. You hear people talking, you can’t move, can’t talk. They put you on the stretcher and take you to the ER. In the end, they can’t figure out what’s going on, so they prescribe an antibiotic, they’re not even sure what it’s for.
It goes on like this for awhile. More symptoms that don’t make sense (digestive problems, bladder problems, eye problems, thyroid problems, back pain, canker sores, headaches, food allergies, anemia, dizziness, insomnia, heat sensitivity, brain fog, and that confounded fatigue). You get tired of the doctors laughing at you, alluding that you’re a hypochondriac, acting arrogantly because you ask intelligent questions and hearing time after time, “Lyme Disease IS NOT a chronic illness, something else is causing your vast and varied symptoms, but we don’t know what.”
You feel like you are supposed to try to go on and live lyfe “as if”…
So, you try the “natural” route: eating healthier, eating organic, supplements, herbs, juicing, cleanses, chiropractic visits. This seems to stay the symptoms at times, but there is something lurking underneath, literally… and nothing seems to really help.
For 20 years, (half of my life!) this has been my story. Well, the short version.
And I’m still trying to process the connection between Lyme Disease and all the other issues my body has. I guess it starts with thinking back to the beginning and feeling like something invaded my body and caused it to turn against itself. And there is the concern that even if I treat all of these symptoms, but the Lyme connection is ignored that it will find another part of my body to attack.
The initial blank stare I get from doctors and the feeling of every doctor wanting to ignore the diagnosis of Lyme disease makes me feel like everyone just thinks I’m crazy.
I do not want sympathy.
I do want support. Acknowledgment that I’m not crazy. Respect that I do know my body and knew 20 years ago that something wasn’t right. I want a doctor to take some time to look at the possibility that Lyme can trigger an autoimmune response in my body, that it can cause the joint pain, fatigue, and muscle weakness.
I feel alone in this when every doctor wants to ignore it. It is a very real part of my life. When they dismiss it, it hurts. It makes me feel belittled. The result is me trying to act “as if” I don’t have a chronic illness. It makes me afraid to talk about it. Makes me unsure of myself and my ability to communicate. And it makes me push myself beyond my limits, which makes the symptoms worse.
I haven’t even mentioned the emotional aspect to this. And I really try not to let on how scared I am at times. I joke about the weakness, the “having to go to the bathroom so often”, forgetting things, flipping words and letters around. It was difficult having doctors tell me I needed to be doing more, telling me I was depressed.
I did feel like a hypochondriac, still do at times. I felt like I had done something wrong to cause what was happening in my body, yet had no control over stopping it. I still feel this way. I don’t know how to communicate about this illness, how to help doctors (and friends) understand that, while I don’t look ill, I am.
I have limits.
I have to have limits so I can keep pushing on without falling too hard while living “as if” in the reality of this crazy lyfe.