Ninety Percent Sure

Read: Risk VERY VERY Small

A few weeks ago, after so much waiting, a number of anxious phone calls and a spout of me crying in a small hospital room, we finally got the results of the pre-pregnancy genetics tests back.

On the test that screened for over 200 potential genetic problems, we discovered that Nathan and I are each carriers for one disease.  However, since it is not the same disease, the risk that we have an infected child is 1/4,400 (0.0227%) for one of the diseases and t 1/3,520 (0.0284%) for the other. 

As for the other genetic test for Nathan, the results came back with a 90% chance that he doesn't have the disease.  Combined with the fact that he doesn't meet the clinical criteria, the doctor felt pretty confident that he does not have it.  However, he did say that they could be even more sure if they compared the results with a blood test from a family member.

Now, this is where I feel I really had a triumph over my OCD tendencies.  Something I struggle with that is very common with OCD and anxiety is that I find it very hard to live with any doubt.  OCD feeds on doubt, and so you want to be 100% sure of everything.  This can lead to all sorts of unhealthy behaviors from checking and rechecking to unhealthily obsessing over horrible possibilities that have only a small remote chance of either being true or becoming true.

You have a feeling that somehow you will be on the wrong side of statistics.  If there's a 97% chance that something is good, it is very easy for someone with OCD like mine to focus on that lingering 3%.  The most ridiculous part is that this fixation on small chances and the feeling that the unlikely occurrence is sure to happen only acts up when considering improbable bad outcomes.  

For example, if someone told me there was a 2% chance I would die tomorrow, I would be very uncomfortable.  I would spend the whole day thinking I was going to hit that 2%.  I wouldn't feel any safety in the 98% chance that I would be okay - I would feel doomed.  But, if it was reversed and someone told me there was a 98% chance I would to die tomorrow, I wouldn't focus on the 2% chance of survival and feel a lot of hope.  It isn't about a misunderstanding of how numbers or chances work as much as constantly fearing the worst while also expecting it as unavoidable.

But when we got these results, I was satisfied.   The odds from the overall couples' screening were clearly astronomically small, but I even feel good about the 90% assurance on Nate's major test.  I heard the results and didn't want to keep digging.

I know we can never with 100% certainty prove the negative.  Even comparing the results to a family member's results, the doctor admits that they still could not make a 100% guarantee.  The truth is that seeking any assurance higher than 90% won't really make me feel any safer.  Starting a family means accepting a lot more risk in my life.  I know by now that the OCD fears and worries aren't going to magically disappear, but accepting these results and feeling good about moving forward was a step in the right direction.  

So, here's to moving forward even when you're only 90% sure.  Sometimes, that's the best thing to do. :)

The Waiting Game

Is it February yet?

Most people don't like to wait.  In our instant-almost-everything society, we want answers, results, and gratification, and we want them yesterday.

That said, those of us with anxiety disorders are notoriously bad waiters.  We were bad even before the internet had immediate answers.  We go negative naturally.  If you give me a situation with multiple outcomes, I am assuming the worst one until I have heard otherwise.  I may even invent a new possibility for failure or disaster that hasn't even been considered before.  Watch me.

None of this works in my favor as Nate and I are having some pre-pregnancy tests done.  My mom's side is of Ashkenazi Jewish heritage, so doctors recommend checking for certain genetic diseases, and my husband also has a serious genetic disorder in his family.

So we made an appointment with a genetic counselor.  I felt sick leading up to it, terrified of what we might discover.  Unfortunately, the initial appointment was basically a nonevent with no answers.  Instead, we each had a blood test to screen for a number of possible genetic problems that could be passed on to future offspring. 

The blood was sent to a lab and the real waiting started: two to three weeks for a call from the doctor to see if we hit an unlucky combo.  Knowing my anxiety levels, we considered not even doing the general screening because I can read a 2% chance as almost a certainty. However, we wanted to make sure we knew the risks we would be taking.  A few weeks of worrying would hopefully assuage some of the worst fears.  

A few weeks seemed bad enough, but the counselor also told us that the test could not screen for the issue in Nate's family.  For that, we would need to wait until March to get an appointment with a geneticist.  I have been concerned about this issue for years and thought we were finally going to get a real sense of what we were facing.  Now they wanted us to wait months longer? 

By some miracle there was a cancellation and we were able to see the geneticist last week instead.  Of course there were no answers there either; instead, we needed another blood test and the results of that test could take 6 weeks.  Those results could give us a definitive answer, but they could also be inconclusive, in which case we would need to get a family member of Nate's blood tested and wait even more.  

To top it off, the geneticist told us that they would only call if it was positive.  I explained that I have anxiety and would be waiting for a call and assuming I missed it.  He said to make an appointment in 4 months and we could go over the results... What kind of cruel joke is this?  Wait four months for the results of a test you are getting in six weeks?  

This was a test that could have ramifications for my husband's health and for our future family.  I want to know what we're facing so we can make a plan for how to move forward.  

Positive results won't change my love for him.  If I had known his results were positive before, I still would have married him.  That said, I want to know so we can take care of his health.  I want to know so we can have a sense of potential future issues.  Limbo - waiting and not knowing - is the worst because you have all the dread and no ability to control or plan.  God can only grant me the serenity to accept the things I cannot change if I learn what I cannot change.

I asked for alternative ways to get the test results.  The doctor suggested that he would memorize our name and make sure to call us either way.  I asked if I could call to check the results after 6 weeks.  I don't think he understood how upset I was until I started crying.

I know that I am basically a professional worrier, but I couldn't help but wonder: Are average people really just that chill?  Are most people willing to sit around not knowing if they or their loved ones have major disorders for months longer than they have to?

The days since the test have been interesting.  I am mostly impressed by how often I am not thinking about it.  The human brain (even the anxious one) is amazing in its ability to distract itself.  With my OCD, I can ruminate and worry and be hyper-focused on the negative and on fear.  However, even at my worst, my brain was still always moving.  Even my worries move around.  This week they have jumped from the test to groceries to taxes.

The truth is that this experience will be a great test of how I can handle parenting.  There are no assurances when you decide to have a baby.  There is no way to avoid all risk and ensure that your baby will be healthy.  You have to learn to be patient and to wait with some sense of grace and optimism.  If I can learn to handle these next few weeks, maybe I'll be okay handling 9 months, and then 18 years, and then a lifetime.  

For now, all I can do is take it one day at a time.