Saturday, January 10, 2009

What Sucks More, Lyme or Autism?

An uber mom asked me that question recently. Not that it really matters because both problems are things I can't change unless we go back in time and fix the medical community much like Sarah Connor tries to do in my coveted show "The Sarah Connor Chronicles". Wow that was a nice run-on.

The answer is different depending on the day. I am more equipped as a seasoned advocate. I understand the medical community and how things like ASD and Lyme are recognized biomedically by a minority of brave, open, and bright physicians. My learning curve is much better. But today Lyme wins because my daughter is feeling worse and there's nothing I can do to take that pain away.

Pain
There is so much physical PAIN with Lyme. A second doesn't go by where Sydney isn't in chronic all over body pain. On average, 20 pain areas: Headache, stomach ache, rib pain, back pain, arms and leg pain, heels, ankles, wrists, fingers. Everything. Then she must endure flares, a time where a symptom gets much worse, a sudden attack of acute pain.

I look back and Leo wasn't really in PAIN. Leo had emotional pain perhaps? Fear, anxiety, stress just existing. But, there were things that could help those things. Yes, the obstacles were ASSHOLE doctors, then ASSHOLE school district people, but all-in-all I knew there was an answer, a solution. Sometimes attainable, and sometimes not. And mostly, a lot of waiting.

Doctors Don't Understand It
The medical community is divided over Lyme, what it is, how to treat it, and yes, it comes down to economics, egos, self interest like these things always do. My obstacles were the same, ASSHOLE doctors that would rather be *right* and dutifully follow dated guidelines when deep inside they know the truth. Good little soldiers not fulfilling their Hippocratic oath of healing. With Autism, it's DAN doctors and parents versus the rest of the medical community as obstacles toward healing and saving money. With Lyme, the same thing, no one believing people that have been in chronic pain, pain that can be life-threatening and unbearable for most. The "quacks" in the Autism world and the Lyme world share the same enemy.

They are Invisible
Both Autism and Lyme can be an invisible. Syd runs around at recess with her friends, laughing. To an observer, she doesn't appear sick. They don't see her pain that she now thinks is "normal". She doesn't remember life without this pain. With Autism, same thing, the amount of brain power, concentration, dedication, and effort it takes for some kids to just get through a day of school. Processing the world differently requires so much for an ASD child. The pain for a Lyme patient goes on unnoticed throughout the day as well. Just keeping her head up all day on top of a burning throbbing neck is a feat in itself. Using scissors and glue is an olympic event on some days, as is staying awake and present while battling fatigue. Ignoring the pain sensation of "knives coming out of my stomach" while eating a PB&J in the cafeteria.

Stigma
Surprisingly, there is a stigma with chronic Lyme. People don't understand it since the acute form (when you catch it early with the accepted symptoms) is treatable with antibiotics. You can be completely well after one month. Because of this, people don't take chronic Lyme seriously. It makes others uncomfortable since they don't understand this disease. Sound familiar? The same thing for Autism.

Advocacy
The same thing with Autism, no one cares about Lyme unless it's in their house, and in the chronic virulent form. I have the same barriers to wellness - insurance companies, the majority of doctors, dated guidelines, misinformation, politics, and special interest groups within government agencies.

I will fight like I always do, and I pray that my daughter will live a pain-free life again. It really sucks.

3 comments:

Jenn said...

As a former ER nurse, I can attest to pain being under-treated. Too often, medical professionals become desensitized and jaded, viewing patients with chronic pain and whiners and/or drug seekers. Pain should be regarded as the 5th vital sign and treated objectively.

One thing I noticed reading your post was how striking the similarities are between the symptoms of Lyme and Fibromyalgia. And boy is there ever a stigma associated with fibromyalgia! Again, with the "whiner/hypochondriac/drug seeker" stereotype that is incorrectly associated with the diagnosis.

Come to think of it, I wonder how many fibromyalgia patients have been incorrectly diagnosed and really have Lyme?!? Hm. Makes a person wonder.

Ashley loves Leo said...

Hey Jenn. I forgot about your medical background. I love the thought of the 5th vital sign!

You are right, fibromyalgia is very similar upon presentation, and actually our local support group includes that disease as well. Similar treatments, etc.

MS is the other scary misdiagnosed one. There is a Lyme documentary that is going around, came out this summer I believe, that presents this chronic virulent form along with the politics/current status in this country. It's call Under Our Skin. I hope people go see it.

Do we have to wait for Lyme to be 1 in 150 for the government to make the stats public? Maybe so. Which will break the bank that's for sure. It's bigger than AIDS at this point.

Jenn said...

You know, I read a headline on the Science Daily news that they expect Lyme to become a bigger problem with global warming. So yeah, the problem WILL get worse.

Thanks for the heads up - I'll have to check out that documentary.

Take care!