Truth or Denial?

I lost a friendship awhile back that frankly, I wasn’t all that sad to see go. She was in such denial about her health issues, walking down the same rocky path that I had fallen on for many years. Low blood pressure. Heart issues. Fatigue. No stamina. Mental health issues. Hopelessness. Kids with similar health issues to my own kids.

She watched me in horror, and eventually, that horror turned to judgment. Yes, maybe I am that gal that thinks that everyone has a tick borne illness. But more likely, I am the gal who knows that Lyme, like syphilis before it, is called, “The Great Imitator.”

Yes. You might have a tick borne illness. If you kids are on the autism spectrum, if you have OCD, if you have depression or anxiety. Yes, you might. If you have MS, or ALS or Rheumatoid Arthritis or Fibromyalgia or Chronic Fatigue or Parkinson’s or Sarcoidosis or Lupus or Scleroderma, they might have been caused by underlying tick borne infections. And no, your doctor won’t tell you that. In fact, if you go to a lyme literate medical doctor and get a formal diagnosis, your primary doctor might not believe you. This disease is under reported. Misunderstood and contested. Yep. It is. But persistent infections are VERY real and very hard to diagnose.

My husband knows a woman who was under treated for lyme a few years ago. Now, she is spending time and money and energy trying to figure out why she still has all these issues. People are telling her to talk to us, to see a lyme doctor, to get better testing, but like my friend I mentioned above, she doesn’t want to. She has seen our journey and she doesn’t want to join us.

So, if you are one of those people, let me tell you something. I am two years and four months into my treatment and the last couple of weeks I have had the longer length of “good days” that I have had in years. What would I be like if I hadn’t started treating? What would things be like if I hadn’t started treating my kids? Theoretically speaking, I could be losing much more of my memory. I could have had heart failure. I was heading down the road to a diagnosis of MS or Parkinson’s, which it looked like I had, but I didn’t. I could be on intense meds for the wrong illness, without hope that I might someday get well.

It’s been two years and 4 months since my diagnosis. That’s all. Sure, things have gotten worse with treatment in many ways, but wouldn’t they have gotten worse in different ways, without treatment? I think so. Trust me on this one. I’ve had this illness all of my adult life. I have damaged my body in so many ways by ignoring it.

I’m still ill. I might always be ill. But, I might not. My doctor believes that I will get well. Friends I have that are well after their lyme treatment think that I will get well. I intend to get well.

Is it really worth giving your life up and your hope away, just because you are scared to have this awful disease? Just because you don’t want to have a disease that from an anthropological perspective, looks like the way AIDS was treated in the 80’s? Be brave. Fight for yourself. Fight for your life.

I worry about moms who have been sick for as long or longer than they have had children. I want so much for them to step out of denial. If you have ever had a tick borne illness, and if you have ever been under treated for that tick borne illness, your children might have a congenital, persistent infection. Better to start treating it now than to wait until they are in the psych ward at 16 or in the hospital, nearly dead from those illnesses presenting in a way that the doctor’s can’t identify. The last one happened to us. If someone would have said to me, “have you ever had a rash and a bug bite?” or “Have you ever thought that your kid’s hyper-activity might be from an infection,” I would have started to research it. And my kids would have been treating long ago, maybe even from the moment they suspected “Cat Scratch Fever,” which is also Bartonella. I would have known to ask for tests. Ask for long term treatment. But I had no idea. I was a scared mom with a nearly dead two year old. I didn’t know.

But now I do. By watching me, you know, too. Information is power. See a lyme friendly doctor and get screened for Lyme. Don’t get a typical test, use a lab that specializes in lyme testing like Igenex or Neurosciences, Inc. You deserve to be treating for the correct disease. Maybe it is a tick borne illness. Maybe it isn’t. But this head in the sand pose doesn’t help anyone.

Today, I want to applaud all the people I know that took control of their health situation and walked into the research, especially the people I have encouraged to open themselves to this awful diagnosis. Like Addy and Eliza and Britta. I want to applaud my friend Julie, who wasted NO time getting her daughter tested. She refused to live in fear and instead, moved into action. Mama Ninja. That’s what I call her. It’s better to live in the truth than stay in denial. Truth puts you on the road to wellness and acceptance. Denial? Not so much.

And this Sunday, attend Julie’s benefit. Or send her a few dollars at her site.


One response to “Truth or Denial?

  1. Thank you for writing this post. I think the issue needed to be articulated in such a way.

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