Anxiety- an after effect, or a symptom?

An interesting “conversation” in one of my online groups this week, regarding increased levels of anxiety and depression conected to PTEN mutations.

This is really how I view the race against Cowden's Syndrome
This is really how I view the race against Cowden’s Syndrome

One of those conversations that make you wonder if it is better to be validated or to fight the idea that this perpetual anxious feeling is actually hardwired into your genes.

I looked up the articles too.  I love to read for myself.  The experiments are done on mice.  I suppose there aren’t enough of us to get a controlled group for a good study, (although there is a drug called rapamycin being studied on humans – but that’s for a different day.)  But, among other symptoms the mice in their mazes did show marked increase in anxiety.  Although.  I have to imagine if I was a mouse in a maze I might get nervous too…


Now I have a lot of throughts on this.

I have always been a worrier – highly anxious about most things.  Anyone who knows me knows that to be true.

But, conversely – throughout large portions of my life there has definitely been something to worry about.

CartoonV9991 ChickenOrEgg copy

So, as the chicken/egg thing goes -do I worry because anxiety is a part of Cowden’s syndrome, and even before my diagnosis I have had Cowden’s?  Or do I have acute bouts of anxiety because having Cowden’s gives me so much to be anxious about?

The best answer probably is – both.

I am a rational person by all rights.  Even in the middle of my worst anxiety I can stop and think and KNOW that my fears are irrational.  I can have the absolute belief that God will continue to care for the situation, and for my loved ones, yet still it is often like a crushing weight on my chest, making it hard t0 think, breathe or move.


What I have on my side is that I was raised to keep on keeping on.  Thanks Mom, and Grandma and Pop especially… when the going got tough, we were taught to keep going.  So while I comfort myself with verses about tomorrow having enough worries of its own, and while I am faced with horrendous tragedies of things that cannot be controlled, I am able to press on.

So I can function, and the anxiety does not cripple me.  And, I know the “nature vs. nurture” reasons to explan it. 

But I do know that my daughter suffers too.  Not just with a PTEN mutation, and Cowden’s Syndrome, but also with anxiety.  She is a worrier, “just like her mother” they say.  Yep.  Maybe she is like me because of genetics, or my example.  I can’t really know for sure.

So what to do?

For me, the first step is just acceptance. 

I am a worrier. 

Regardless of the cause, and allthe logical justifications I can give myself – I will remain a worrier.

Then, find an outlet.  I am still working on this one.  I am thinking I like to write – so maybe that will help some.  I would like to get a few minutes to myself now and again.  I used to love to walk.  Maybe one day there will be time for some nice long walks.

I meditate a bit on the bright side.  Be grateful for the “good” that comes with a chronic illness like Cowden’s Syndrome.  I am not referring to the pain, and the surgeries, and the cancers looming, but rather to the “warning” system built in.  Parents would do anything to protect thier children.  How blessed am I that even among the strain of ceaseless appointments and hours waiting at offices and for results, we have a warning system.  I am confident that if we are vigilant, the Cowden’s won’t “get us.”


Stay organized.  Don’t let the bills, the list of phone calls, the shredding, or the sorting to pile up.  It will just keep coming.

Stay ahead of the school projects.  You never can tell where tomorrow is going to land us.

Laugh.  Often.  It is deeply good not only for the anxiety, but also for the soul.

lsughing dog

Recognize you have lots to smile about.

Acknowledge the pain of others and “Pay it Forward” when you can.  I find that  NOT dwelling on our lives here, helps make me less anxious.

Did the Cowden’s cause the anxiety?  Is it hard wired into who I am as a person?  Is Meghan destined to be forever wondering and worrying?  Or, did a life of doctor’s appointments, pain, chronic disease, and general worry, create the anxiety? 

It really doen’t matter because it is here.  It is part of me, and to la large extent – us.  I doubt it is going anywhere.  I think its just my job to control the beast the best way I can, one day at a time.

8 thoughts on “Anxiety- an after effect, or a symptom?

  1. You know, I’ve pondered about this same thing. Growing up – I was saddled with MUCH worry and anxiety 24/7. Personal things in my life caused me to wake up worried – go to bed worried – eat and sleep and basically be worried and ON EDGE every single moment of the day. Literally.

    Then cut to my 39th year – and the bomb drops of Lhermitte-duclos disease and then Cowden’s Syndrome. I’ve wondered and discussed this in therapy to a point that if I didn’t have SO MUCH anxiety and worry in my childhood/teenage years that “maybe” CS wouldn’t have presented. You know?

    I know that’s a long-shot – but it’s something I still ponder about. And then cut to today – anxiety and worry is my middle name but I’m doing all I can to keep it in check. I tell my Mom that Cowden’s Syndrome is the “What if” disease….”What if I get uterine cancer?” – “What if I get kidney cancer?” and so on…

    Funny that you mention meditation….I’m reading “Eat Pray Love” and I’m really resonating to the meditating part. I need to look into that. 🙂

  2. I have wondered for many years. Even before I was diagnosed with Cowdens. Even as a child I worried and was so emotional and had so much anxiety beyond normal. I often said to myself. Its just the way I am made.

  3. I was diagnosed out of the blue with Cowdens Syndrome….My dad got diagnosed in his 60’s and I am nearly forty….I am interested in finding this blog…Noone here knows anything about it…I keep on top of my health reporting any issues early and at the moment the majority of issues relate to regrowth in my tongue……I sometimes wish I had chosen my brothers path and chose not to have the test but on the positive side if I have to face any aggravation of this condition I would like to that I identified it early…I guess I feel quite positive because had some symptoms which only made sense through the diagnosis …I have other health issues and fight everyday to have a normal life,…maybe its blind foolishesness or my way of coping…In my job I am surrounded by children with much more profound and complex needs than mine…I guess for me its there drive to smile inspite of everything that keeps me going…If they can so can I…You may think I am foolish but this is my way of surviving i guess

    1. Sounds like you are dping everything right. It is a battle for all of us. I am also almost 40, but I was diagnosed because of my daughter in the fall of 2011. I am grateful every day that we are not as bad off as many. You will find I am connected to a few other Cowden’s Syndrome blogs. They may chime in here. There are a handful of us – scattered and trying to get the word out. You are far from alone!

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