As with any high-risk pregnancy condition, ICP moms suddenly find themselves consumed by the diagnosis, and our time is no exception. Our days are filled with appointments for blood draws, ultrasounds, non-stress tests, and specialist appointments, all on top of our regular prenatal care. Not only are we coming to terms with our diagnosis, but we are also spending our days juggling our schedules and trying to prepare for a baby that will be coming four weeks earlier than we expected. Do we begrudge this time spent? Of course not. We are caring for our babies before they are born, but that doesn’t eliminate the frustration of how time consuming a high-risk pregnancy becomes.
#9: Unsolicited advice
For some women who have ICP, the diagnosis feels intensely personal and they prefer to keep their struggles to themselves. Many others, like me, find themselves driven to share it with the world. Whether this is because we feel comforted by confiding in our friends and family, or because we feel moved to spread the word and help others get diagnosed, everyone who does speak out about ICP finds themselves suffering from a barrage of unsolicited advice. We are confidently told about much “better” solutions to itching than using dangerous medication (absolutely not the case where ICP is involved – see my previous post) – Benadryl, oatmeal baths, lotions, essential oils, and on and on. Changing our diet will help, it is patiently explained. Go gluten free, go sugar free, go paleo, go dairy free, go low carb. Get more sun, get less sun, do yoga, stay in bed at all costs, or run twenty miles a day, the advice is endless, conflicting, and frustrating. While many women do use self helps, they are not a substitute for proper treatment, and we get irritated with the suggestion that we have control over our condition, as if it is a personal failure. Of course most people who offer us their advice do not mean it to be taken this way, and truly intend for it to be helpful. Sometimes the advice spews forth unbidden because people simply don’t know what else to say to us.
#8: Lack of sleep
Every pregnant woman finds herself sleeping less than she did before the pregnancy. Between frequent trips to the bathroom, heartburn, aches, and shifting weight, sleep can be more difficult to find than it had once been. Take this lack of sleep and multiply it by a thousand to understand what ICP can be like. Add to the usual pregnancy complaints an itch so overwhelming that you can’t ignore it, you can’t sleep through it, and what’s more it gets worse at night. Add the anxiety of a condition like ICP, and when you do manage to fall asleep, you wake abruptly in the middle of the night consumed with the fear that the worst has happened. Sleep quickly becomes nothing more than a memory, and when we say that we got more sleep after our baby was born, we are not joking.
#7: Labs sometimes don’t match our symptoms
Some ICP moms are fortunate in a sense that when they are tested the first time, their lab work proves that their symptoms are real. For many others though, the itching begins, everything seems consistent with ICP, but the labs tell a different story. Everything appears perfectly normal on paper. We begin to doubt ourselves and start to believe that maybe it is all in our heads. It’s even more difficult when our doctors are not convinced that we have ICP. The truth is that it is very common for labs to initially appear normal and only later reveal what we have known in our hearts all along. These false normals can continue for weeks or months, and while no one wants to be diagnosed with a high-risk condition, we also need to have an answer for why our lives have suddenly been turned upside down. When those labs finally do reflect what we have been experiencing, many women actually feel relieved. A diagnosis means help, it means treatment, and it means being taken seriously.
#6: Relentless itching
And let’s talk about that itching for a moment. I’ve had that itch described to me in many ways over the years, but there are a few things that are consistent. It’s not a normal itch. It feels wrong, toxic, burning, or like pin pricks. The itch feels like it comes from inside, a deep and relentless itching. Above all, the itching cannot be overcome or ignored. You cannot stop itching. The inescapable nature of the itching means that you feel trapped.
#5: Being judged
Motherhood is one of the experiences in our lives that leads us to the eternal feeling of being judged. Every time someone asks us a question about our choices from diapering to feeding, from birth plans to prenatal vitamins, we tense for a moment, wondering what the right answer is…or even if there is a right answer. No matter how strong our convictions, every time we open our mouths to answer a question we feel our bodies tighten defensively as we wonder if we will get a lecture or a disapproving eyebrow lift. ICP is simply one more reason for us to feel judged. We are told we shouldn’t take medicine, we shouldn’t deliver early, we shouldn’t have more children, we are making a big deal out of nothing, or fill in the blank.
#4: Our doctors sometimes don’t know much about ICP
Some of us are lucky and our doctors know ICP, know what to look for, and know what to do about it. Others of us are also lucky, and though our doctors haven’t heard of ICP or know little about it, when we come to them with information they are open to learning about it. However, for some women, our doctors have many misconceptions about ICP – that it is not harmful to the baby, that it doesn’t need medication, that it can’t show up so early (or so late), and the list goes on and on. In these cases, it falls upon the mother to be the advocate for herself and her unborn baby. Having a high risk condition is difficult enough, but having to fight for testing, medication, delivery, and management is frustrating, exhausting, and emotionally draining.
#3: Our bodies are failing us
We can tell ourselves as much as we want that we are warriors (we are!) and that we are and our babies are fighters, but at the end of the day, when we are lying awake in our beds longing for the sleep we so desperately need, there are different sentiments that linger in our thoughts. Never before in our lives have we needed our bodies to serve us well, and right at this moment is when they fail us. At this moment, when we need them to provide for not only us, but also our babies, they let us down. Feelings of guilt, frustration, grieving, and fear all intermingle in a complex train wreck of emotions as the amazing experience we dreamed our pregnancies would be suddenly turns into a nightmare.
#2: Balancing risks
When we learn that we have ICP, the first thing many of us want to know is how do we fix it? The sad truth is that there is no easy answer to this question. We can reduce risks by using proper medication and delivery. In fact we can even reduce the risk of stillbirth to that of an uncomplicated pregnancy, which is fantastic news. Unfortunately we can only mitigate our risks of stillbirth by accepting other risks associated with early delivery. This is not an easy thing to do. Is it the right call? Of course it is. There is no treatment plan for a stillbirth, but modern medicine can produce amazing results for our early term and premature babies. It is still not easy. Knowing that our early delivery puts our baby at higher risk of breathing problems, jaundice, trouble regulating temperature, and so on only increases our feelings of guilt and frustration. In some cases, our ICP is not being well-controlled by medication and we and our doctors are all plagued by the problem of trying to decide at what point our babies are better off out than in. There are no easy answers to these questions, and we and our doctors can only do our best with the information that we have.
#1: No one understands
Our support groups at ICP Care offer a place for women to vent the fears and frustrations of our diagnosis as well as share in the joys of our miracle deliveries. A common and recurring theme is that no one understands what we are going through. When our pregnancies are over and we can step back and try to view things through the eyes of our friends, it is easy to understand where their difficulties originate. After all, except in rare cases, none of our friends have ever heard of ICP. Looking at a woman with ICP, you wouldn’t guess that she is sick – certainly not so sick that her baby could be in danger. Who would ever believe that a little itch could be dangerous anyway? For someone who hasn’t had a high-risk pregnancy like ours, it is impossible to understand the anxiety that you experience. Over and over I see women asking us how they can help their family and friends understand. It can be difficult, but we can make it happen. We spread the word. We let people know that our condition exists. We talk to our family and friends. We share our experiences, share our stories, share our support groups. And for a couple of us, we write Top Ten blog posts that attempt to explain it all.