Top 10 worst things to say to a woman with ICP

#10.  I got itchy when I was pregnant, too.

Pretty much every woman with ICP is told by someone or another that they also were itchy when they were pregnant.  After speaking to many ICP sufferers I can honestly say that it is one of the things that irritates us the most.  Maybe this is an unfair reaction.  After all, the person talking to us is trying to establish a connection to our bizarre story, share experiences, and so on.  So why is this so annoying?

There are, it turns out, a couple of reasons.  We all know that getting a little itchy is a normal part of pregnancy.  Except for those with very early onset, most of us even experienced normal pregnancy itching before the ICP set in.  That itching from stretching skin can be annoying.  It is nothing even close to ICP itching.  ICP is an itch that cannot be ignored and cannot be overcome.  You can’t escape it, and often you can’t even make it better. It is a toxic itch that feels like it is eating you from the inside out, and when ICP moms have someone tell them that they were itchy, all we can think is that he or she doesn’t know what it means to really itch.  Is this fair?  Nope.  Just the way it is.

What is the other big reason?  Even if you have experienced a horrible itch that could be comparable to cholestatic itching, it still doesn’t carry the weight of anxiety that a diagnosis of ICP brings.  Having an unbearable itch AND knowing that your body is poisoning your child can be enough to push people into insanity.

#9.  You should eat differently (or fill in the blank) and you probably wouldn’t have ICP.

While comments such as these are meant to be helpful advice, you would be best served by avoiding them.  ICP moms experience enough guilt the way it is knowing that their bodies are failing their babies.  Advice like this only makes us feel judged – that people are looking at it as a personal failure.  I tried to avoid ICP.  The truth is that it can’t be avoided.  Sometimes people are lucky, but sometimes no matter what a person does, they will get ICP.  We have a faulty gene, and nothing can fix that problem.

#8.  Just take some Benadryl.

Believe me, we’ve heard it before.  We’ve all heard of Benadryl, we all know it can help with itching.  ICP itching is not a histamine response, and Benadryl only works for histamine itches.  It won’t help us.  It might put us to sleep, but it won’t stop the itch.

#7.  Poor little baby.

This most often happens to us after birth when people are looking at our tiny preemies.  There are many variations on this theme but they all make us feel terrible.  We know that it was not our baby’s fault that he or she needed to be born so early, and hearing again and again how horrible our baby’s early life was because of it makes us feel even more guilty.

#6.  You’re not going to stop having kids just because you were itchy, right?

In general I don’t like statements that make people feel judged.  If any person decides that they don’t want more children for any reason or no reason at all, that is a personal choice.  Even if someone simply could not bear the thought of going through the physical torment that is an ICP pregnancy, that is more than reason enough in my book.  Even more importantly though, ICP does carry serious risks to the unborn baby.  A couple or a mother who chooses not to have more children because of the high probability of another high-risk pregnancy does not need this sort of input.

#5.  You’re done having kids now right?

On the flip side, many of us have heard the opposite.  Sometimes women are even told while they are pregnant that they should never have become pregnant again, or that it was irresponsible.  If you absolutely cannot resist having these thoughts, please keep them to yourself.  There is no recommendation against women who have had ICP getting pregnant again.  In fact, published scientific literature says that limiting family size because of ICP is unnecessary.  If women with ICP want to have more children, I commend them for being willing to suffer through another pregnancy.

#4.  Don’t worry, it will all be fine.

This comment is always meant in the nicest of ways, and I almost feel bad including it on this post.  It is supposed to be reassuring, but it isn’t.  Sometimes I think people say it because they simply don’t know what else to say.  The reason it bothers us is because it feels (unfairly) that the person saying it is downplaying all the anxiety and all the concern.  It feels like all of our worry, all of the risk of our diagnosis is being dismissed.  Even though we know that it is meant to be encouraging, it still bothers us.

#3.  I never wanted to take medicine when I was pregnant.

The statement of hidden judgement.  It implies that taking medicine during pregnancy is bad and that we are bad mothers for doing it ourselves.  Sometimes people are less covert and will say it outright.  Sometimes taking medicine in pregnancy is far better than not taking it, and ICP is one of those conditions.  Not only that, the medicine we take has been thoroughly studied and it is safe for us and the baby.

Sometimes women with ICP take medicine to help them sleep through the relentless itching.  This leads to even worse judgement, and often horrible feelings of guilt for the mother herself.  I hate it when this happens.  People forget sometimes that the mother is connected to the baby.  If mom can’t sleep, this is bad.  Lack of sleep does not have only mental effects, but negative physical effects as well.  We are told all the time that it is important for our health to get enough sleep.  When people are sick they are told they need to rest.  ICP moms are sick, and the one thing they cannot get is sleep.  Getting enough sleep can slow the progression of the disorder, and that is hugely important for both mom and baby.

#2.  I would never force my baby to be born before he/she was ready.

Being told that your baby needs to be born prematurely is a hard concept to get used to.  It is scary, and many women struggle with it mightily before coming to terms with the idea.  Throughout our pregnancies we are bombarded with information about how to recognize preterm labor and prevent your baby being born too soon.  Suddenly you are told the opposite.  Guess what?  We do not want our babies to be born prematurely.  We don’t want to have to force our infants into the world too soon.  We know that there are risks associated with preterm birth, but these risks are far better than losing our baby to stillbirth because we were not brave enough to do what needed to be done.  Our preterm births are the most loving things we can do for our babies.

#1.  Stop itching.

This ranks number one on the list because of the frequency with which we are told to “stop itching.”  It is absolutely relentless.  Everywhere we go we hear this again and again.  Sometimes we get our hands slapped.  Believe me, we have all been told at some point in our lives that we shouldn’t itch.  We’ve all learned that itching will only make it worse.  There are a couple of things you should know about cholestatic itching.  First of all, itching doesn’t make it worse.  The reason itching sometimes makes it worse is because it can spread toxins under the skin.  This is not the way cholestatic itching functions.  The toxins that cause the itching are already distributed and then they begin to accumulate on nerve endings.  Itching will not make more of that toxin on the nerve endings.  The second thing to know is that you can’t ignore the itch.  It is the most overwhelming thing you can imagine.  Being told to stop itching when it is impossible only adds to the feeling of insanity and I’ve known more than one woman to have a complete breakdown after being told one too many times.

 

So with all of this information about what not to say, you might wonder what you should say to a woman with ICP.  There are many things you can say.  Ask us about ICP.  Ask us what we’ve learned about it, how a person could tell that they have ICP.  Or keep things simple.  Say that you’re sorry we’re dealing with something so difficult and that you will be thinking of us.

8 thoughts on “Top 10 worst things to say to a woman with ICP

  1. I knew I had ICP, but the more I read the more I identify with. I now know that many of the discomforts I took for granted as part of pregnancy were ICP. I definitely will know if it happens again.

  2. #2 is a big one for me. Its all i’m hearing lately. I personally can’t wait to get baby out of my toxicbody- i’m practically counting down the days! But all I hear aroud me is “its such a shame you’ll be induced early” and “the longer the baby’s in the better.” Well not in my situation! The baby is obviously better out than in with ICP!

  3. Thanks so much for your website. This Top 10 list is so true! I am told all the above by well meaning persons, it was infuriating!

  4. My favorite: “It’s just itching? That’s it? That doesn’t sound too bad.” ……………………………………………………………..

    Grrr…..

  5. I had it with both pregnancies during the 80’s , nurses told me to put calamine lotion on my hands legs tummy , what no one could get their head around is that it’s on The inside of the body. I was so miserable but still went ahead and had my second child straight away as I new I would never ever have another if it didn’t happen quickly.
    My daughter also has had the same with her pregnancies, she had the benefit of specialist help and the medication helps up to a point.

Leave a Reply

Your email address will not be published. Required fields are marked *