Disclaimer – I’m not a doctor nor am I writing this as a healthcare provider. I am writing this based upon my understanding of information I’ve received over the past few months.
Second disclaimer- this post focuses specifically on miscarriage. But some of the take-aways could be applied to other situations in which a loved one is in despair.
If you read my post from June, you’ll know things got pretty rough for me this spring. I had a miscarriage at eleven weeks pregnant. I had to have surgery because the fetal heart stopped but my body continued to carry the pregnancy. It was grueling.
Unfortunately things with my miscarriage only got more complicated and challenging. I was diagnosed with a Partial Molar Pregnancy. This happens due to an abnormality during the fertilization process and the embryo-later fetus ends up with 69 chromosomes instead of 46. A fetus will not make it to birth with this condition. And the rotten icing on this moldy cake is that the placenta has abnormal cells so a tumor develops alongside the fetus. If you think this sounds like the premise of some weird sci-fi thriller, I can tell you that yes, it sure does but yes this has been my real-life experience for almost three months now. Anyways, typically the surgery following the miscarriage is all that is needed to remove the tumor. BUT people who get this diagnosis must spend months being screened following the miscarriage to ensure the tumor was entirely removed during the surgery. The screening involves weekly blood draws to measure the pregnancy hormone level and to make sure it decreases. Once it gets to a certain level, doctors will move people to monthly draws and after a certain period of time (seems different depending upon the doctor) – people are considered to be in the clear, both in terms of the tumor and in terms of trying to conceive again. And most people go on to have healthy pregnancies the next time. BUT… if the pregnancy hormone level doesn’t go down, there could be what is called persistent Gestational Trophoblastic Disease (GTD) and chemo may be needed.
So for me, for two months, all seemed to be progressing along. My levels were dropping slowly but surely… until they weren’t. A few weeks ago, my doctor called me to tell me that my level was the same for the past two weeks. She was going to need to do more research to determine if I was still in the normal range or if I had persistent GTD and needed chemo. Lovely. I hauled ass to a specialist and got the VERY reassuring news that I seemed to be progressing quite well, he wasn’t worried and as long as my levels didn’t rise the next week, I could be moved to monthly blood draws. He talked to my doctor and one week later, I was moved to monthly draws.
I am struggling to find the words to adequately describe this experience. It is grief and trauma and nightmares and disempowerment. It’s so scary in general and that the United States is in a particularly perilous state for reproductive health makes the experience terrifying. I need so much support these days. I know it’s hard to know what to say or do so I’m giving you some ideas. And perhaps, if you’re one of the few people who read my blog without knowing me personally, if you know someone going through some type of extreme pregnancy loss or who is in some other very tough life experience, some of this advice might be helpful for them too. That said, my first piece of advice is…
Ask. When someone is going through an extremely challenging time, ask them how they are doing, what they need. So to my friends and family, please ask me! Ask me what I need. I know you probably don’t know what to say. I don’t even know what to say myself. But don’t avoid me just because you don’t know what to say. Don’t talk to others about how you don’t know what to say or do. Please don’t speculate with each other about how I am or how I seem. Ask me, talk to me, tell me. This experience is painful – and lonely– enough. I don’t want to feel like people are then tiptoeing around me or talking about me when I’m not there. Just be genuine and be real. If you say the wrong thing, we’ll talk about it. But I’d rather you say the wrong thing than say nothing or say little.
But first.. Listen. I need to be heard and I need validation. The best way to offer me this much needed support is to listen and hear me out.
Be patient. My mood and outlook on life is all over the place. One moment I am so proud of how strong I’ve been and how rock solid my marriage is. I get filled with this strange energy that makes me giddy. I’m grateful for the love, comfort and resources in my life. Then in the next moment, I hate everything. I want to shut everyone out and hide in my room, specifically under my bed. Those moments pass and chances are, you won’t catch me in one. But you may see me when I’m off or overly sensitive or insecure. I’m going through one of the hardest things I’ve ever gone through right now. It is lonely and terrifying and sorrowful and despairing. Those feelings are always there even during the better moments. And when my outlook on life is bad, please know that I am still considering and acknowledging my privilege and the amount of good luck I typically have. Everyday I think of how much harder this miscarriage would be if my life were different. I think of women who experience a molar pregnancy and are also refugees or are in abusive relationships or are refugees and in abusive relationships. They’re out there as we speak and I cannot imagine the horror. I try to keep my privilege front and center as best I can. And… I am overwhelmed by the events of the past two years. I’m able to appreciate my privilege and be angry and sad about my recent misfortune. In fact, I worry that if I only focus on my privilege and overall good luck I will, in some capacity, neglect the pain of this time, which will only make things worse.
Hope has become a four-letter word to me. More often than I’d like to admit, I’m out of optimism and out of luck. What is the point of faith? Where is hope getting me? Once I got pregnant in the midst of a tumultuous change in my cycle, I hoped for a healthy pregnancy. I hoped to not miscarry. Then I miscarried and I hoped I could recover and be back to family planning quickly. My husband and I initially thought the miscarriage was over and we could resume our baby-making plans in July. But the miscarriage was far from over. It came back with a vengeance and bringing with it more fear and uncertainty. At first we thought by September we would be in the clear. . Then I hoped my pregnancy hormone levels would go down by September… by October… then I feared I’d have to have chemo (Thank goodness, I didn’t!). But what is the point of being hopeful when everything just gets thrown back in my face? Where were silver linings and hope when I was registering to be an oncology patient? I don’t need answers to these questions. I just need a good friend to listen and then maybe say, “I can’t really imagine what this experience is like. But I do know I’m hopeful for you. I’m sorry hope feels like a terrible joke to you right now and I can understand why it does. But that doesn’t mean it no longer exists for you and it doesn’t mean you’ll always feel this way.”
Remember that my experience is quite different than yours. Recognize that comparing your experience to mine is not helpful, however well-intended. This is always true, isn’t it? When my husband and I were still dating and about to move in together, people had all sorts of opinions and advice. And most of it was totally irrelevant. Our relationship is ours alone. My experience with pregnancy and parenting will not be anyone else’s but mine and it’s aggravating and sometimes hurtful when it is treated otherwise. I know this is something everyone deals with at times. People in our lives (sometimes people we don’t even know) offer unsolicited advice and though they often mean well, it comes off as condescending. In addition, I try hard not to do this to others, though I’m sure I have at times and for that I really apologize.
Understand that this type of miscarriage is especially horrendous. I won’t truly enjoy not being pregnant again until after I’ve delivered a healthy baby into this world. I’ve been consuming alcohol and foods that are pregnancy no-no’s and yeah it’s enjoyable but it’s also sad. Still. Three months later. Everyday I feel empty. Everyday it feels like something is missing from my life. I feel devastated when I see that my stomach is the same size it usually is. I know that sounds weird, especially in a culture so focused on women’s appearance but it’s true. I don’t want my quasi-flat stomach right now. I want to have the big belly I was supposed to have at this time. I want a healthy pregnancy and a healthy baby. All that other stuff just doesn’t matter as much to me anymore.
If you have had a miscarriage, I immensely appreciate what you’ve shared with me. But also know that I can’t even fully relate to most women who have had a miscarriage anymore. I just keep becoming more and more isolated in this experience. A molar pregnancy is a hell that drags on and on. I am a strong person and, privileged as I am, I’ve also gone through a lot and handled a lot on my own from a very young age. I have experienced a lot of pain and at my core, there is much sorrow. In my life, this isn’t even the most emotionally horrific experience. There is one other experience that was more of an emotional nightmare than this and I live to tell the tale. Know that I will get through this but not because anyone else did but because I will. Only I can know my life and my experience and in the future, how pregnancy and parenting will be for me in the aftermath of this experience.
Also even though this experience is so unique, personal and individual, I don’t want to be treated as “an other.” I still want to connect and be connected. I find it to be a tough balance. In trying to achieve this balance, it is helpful for me to have people who will listen without judgment and without feeling the need to say the right thing. As I move through this experience and into the future, it will be helpful to be asked how I’m doing and what I need. I hope my next pregnancy is healthy and successful. I will likely be excited but terrified through all of the next first trimester and perhaps some of the second (perhaps all of it). And even if it is a healthy pregnancy that results in a healthy baby, even then it is going to be a challenge. I will be so happy but I will not have forgotten or gotten over this experience. I imagine things will feel different for me – in ways both good and bad. I think there will be some deeper levels of appreciation – at least for me and compared to where I personally was before (I am not saying I will appreciate my child more than people who have not had a molar pregnancy. I doubt that’s true and I have no way of knowing what the good and bad feel like for other people! And we all have something right?!). I just know that my next time will probably be more special for me. That said, there will be things that will be even harder. Parenting, so I hear, can be pretty isolating and I’m worried I’ll feel more isolated because of this experience. I’m worried I won’t be able to relate to other parents, at least not initially, because my initial experience was so surreal in a terrible way. It may be hard for me to hear what other people find challenging. Thus next time I’m pregnant, if people are saying things like “oh well just wait til you’re in the second trimester” or asking how much the symptoms are bothering me, I may find it very frustrating. I didn’t make it to the second trimester the last time and I would take nausea over a molar pregnancy ANY day (and remember the nausea associated with a molar pregnancy is typically more severe than average pregnancy nausea). Then again maybe it won’t bother me after all. So it will be more helpful if you ask me, “How is it for you this time around?” Please remember that my next pregnancy will not be my first. I will never again experience the excitement of a first positive pregnancy test, a first ultrasound and the experience of my body changing as it starts to grow another human. Those experiences have all already happened for me and they did not have the outcome I’d anticipated.
Not that I think any of my friends would say this but just to put it out there, I doubt I will want to hear things like “They’re so much easier to take care of now.” This is something I’ve seen posted on friends’ Facebook pages as they approach their due date. Think about how that feels for anyone who’s experienced a pregnancy loss. I know people mean well but sometimes it’s not about what you meant. Try not to tell me to enjoy things while I can. I know parenting is going to be harder than I ever could imagine. I’ve been aware of that for quite some time. But you know what? So was losing a pregnancy. I never knew before that a miscarriage could lead to cancer. What I’ve learned these past few months is that the road to parenthood can be much harder and much sadder and much scarier than most people realize. So it’s just going to feel dismissive to hear “sleep while you can” or “enjoy your free time now.” Believe me, I sleep a lot and I enjoy it and I appreciate my free time. And I can finally say I’m ready for something else. Not to mention I’d rather lose my sleep and my free time if it meant my baby and I were healthy than ever be in this situation again. So I imagine I will often think ‘I’m healthy, my baby is healthy, this sure beats a traumatic miscarriage followed by a chemo scare!’ You probably will hear me say that. And like I said, it’s a tough balance because I don’t want you to treat me differently. I don’t want to be tiptoed around. I don’t want the isolation I already feel to be compounded. So again, I just ask you to be open, be curious and don’t make assumptions. I ask that you stay as hopeful for me as you were before this happened, though recognize that I will feel different. I’ve joined discussion boards for women who have a molar pregnancy and for those who have been medically cleared and tried again, they nearly all have healthy pregnancies the next time. I have to remind myself of this over and over as each month drags on and on and hope feels further and further away. It is important that those around me also remind me of this and reflect hope back to me.
None of my friends or family have asked but co-workers have asked if I’ll still be able to have children after all this. I don’t want to be asked questions about my fertility. I most likely will go on to have a healthy pregnancy next go round. The specialist I spoke to said that if women have more than one molar pregnancy that there is a chance their eggs are more susceptible to this type of pregnancy. However, even then, he told me, not every pregnancy they have will turn out this way. Though of course there are things that can come up other than molar pregnancies, but even so, it is still most likely that my next pregnancy will be healthy. And I’m getting way ahead of myself. Because right now, all indicators look good. My overall fertility is not in question right now. And being asked such questions does not help with my whole current lack of optimism.
All this said, I’d still rather you say one of these things I don’t want to hear than you hold back. If something comes up, just hear me out. You all are good friends. We’ll work though it. And all my friends have said or done things that are really helpful to me throughout this. Some of the things that stand out are-
“You are a strong woman.”
“You’ve already gone through a lot, that’s how I know you’ll get through this.”
“Well you have to have the most wonderful baby now. After all, you’ve already been through hell.” (This was a silly comment from my hair stylist but it felt like a caring acknowledgment of how much I’ve gone through).
In talking with a friend about all the rare pregnancy complications I’d heard of before but had never heard of a molar pregnancy, she jokingly said “Well you just had to go and outdo everyone, didn’t you? Like you think you’ve heard of bad pregnancy outcomes – but have you heard about this? Top that.” (Again this was silly but also validating).
The times when people just listened, heard what I had to say and provided validation and compassion. The times when people acknowledged they just didn’t know what to say and sometimes there are no words. The times when people both listened to me talk about this but let us also move on to other topics because there is more to life than pregnancy and parenting.
These are the kinds of things I have found helpful. Like I said, listening and asking is essential. And perhaps being told that all this makes me stronger.
Perhaps there can still be silver linings.