Follow me on the crazy, hopeful, discouraging, funny, and ultimately successful (one way or another) path to parenthood while facing infertility.

Thursday, July 16, 2015

How to Communicate Effectively With Infertile People

This week, I took a training course called Youth Mental Health First Aid USA, a program that actually started in Australia and has spread like wildfire internationally and within the US. I now hold a certification through the National Council for Health to provide initial help to young people experiencing mental health problems. The training was 8 hours long and incredibly fascinating.

Part of the training was focused on "How to Communicate Effectively With Young People." Since everyone in the room was a school professional of one sort or another, I hope that we would all have the basics in this, but the focus was really on communicating with young people who are near or in crisis and need someone to really listen to them regarding a possibly sensitive mental health concern.

One of the suggestions a trainer gave was to think about how you would discuss a physical ailment or emergency with a teenager. That sent my own synapses careening into the parallels between having to communicate with someone about a sensitive topic that may make you feel uncomfortable but is very, very serious...and talking with people who are going through infertility.

Please know that in no way am I trivializing mental health crises in teenagers by making this comparison. Nor am I trivializing the trials and tribulations of infertility testing, IUIs, IVFs, or exploring and pursuing options such as adoption or living child free. The advice really stood out as being helpful for both sets of people, and good listening skills are good listening skills. And, infertility and the associated feelings of failure, a life interrupted, loss, depression, and hopelessness are really not all that dissimilar from some of the scenarios we were given. There is a stigma with mental illness that should not be there, and there is a stigma with infertility that should not be there. Both are diseases that require treatment and coping skills, and both can be treated as things that aren't as serious or life-impacting as they actually are.

That in mind, here are some wonderful ways to communicate with people struggling with infertility:

Be genuine. 
For teens, the advice was that they are great BS detectors (not quite described that way in the manual), and so don't pretend like you are cool with a conversation if it makes you uncomfortable. Admit that it makes you uncomfortable, but also how important it is to have the conversation and make the person in crisis feel heard.

For me, this struck a chord because so often questions weren't asked of us when we were in the thick of IVF and miscarriage and disappointment after disappointment. It was an uncomfortable topic, and rather than admit that "I don't know what to say" or "This makes me feel awkward" and then ask a question, some people would just ignore the issue altogether, leaving me feeling isolated and like my experience was taboo. Or that the person at the time just didn't care. Likewise with a quick, "How's all that going?" followed with an immediate change in subject. An attempt is made, which is great, but as soon as talk of sharps or Lovenox bruises or fluid in the uterus comes up, it's obvious that the person is dying to switch topics to an upcoming movie or some other innocuous topic.

So be genuine--if you are going to ask questions or listen, please do it like you mean it, and if it's awkward or you feel ill-equipped, just say so. That means so much more than ignoring the issue and making me feel like you just don't care.

Try not to give advice. 
This is super hard. This is the whole not telling someone what they SHOULD do, but instead listening to them where they are, acknowledging that it's hard, and maybe giving information for where the person can get further resources.

In my experience, everyone wanted to ask me if I'd tried acupuncture (yup) or a modified diet (yup) or this or that protocol. I was thankfully not the recipient of too much "just relax," probably because I was very, very open about the myriad medical goings-on and did not shy away from explaining exactly HOW this was all going down (or supposed to go down). I think I would have had a hard time not jumping down the throat of any "just-relaxers." I was told to eat more brazil nuts, to light red candles, to try meditation tapes to help my desired situation to manifest. All interesting thoughts on how you can make a baby when facing a variety of diagnoses and what seemed to be the longest string of bad luck, but none of it helped. ESPECIALLY not suggesting that I could somehow "invite my baby to come to me." Oh holy jeezum, once I was in a fertility yoga class and the instructor was a sub and she had us position ourselves on the floor with a bolster in a welcoming posture and put our hands, palms up, on our bellies and visualize our babies floating in the air above us. "Then just invite your baby to come to you, with the purest of intention," she droned in a soothing voice. If this works for you, then great, but WHAT IF YOUR BABY HAS BEEN DENYING YOUR INVITATION FOR YEARS? What if the thought that there is a pool of babies in the ether above your head ACTIVELY CHOOSING not to come to your uterus party is not so much zen but instead highly upsetting? What if, as I had, you've just had a miscarriage where you thought you'd finally gotten that prized RSVP but it turned out that nope, you just weren't chosen, AGAIN? That kind of advice most people can do without.

Under this category are also wonderful pieces of advice like, "Just get over it," or "chin up," or "think positively." As if you could get over the gaping wound that is being unable to conceive with your loved one, or the horrible loss of a pregnancy that leaves you feeling empty and maybe even illogically responsible. Pretending to be happy (chin up!) only serves to make others feel comfortable, because they don't have to see the visible proof of your loss and grief. And thinking positively can be a lovely thing, but as advice following a loss or repeated failure? Sometimes you just want to live in negative nellyland for a while. And thinking negatively will not actually change any kind of outcome. You can't think yourself not pregnant any more than you can think yourself pregnant, and that kind of magical thinking can be really harmful to your mental health in the long run. Because we just don't have that kind of power.

Also, the pain of infertility isn't something that just goes away, even if you find resolution to your family building efforts through pregnancy, gestational carrier, adoption, or living child free. You should still be able to talk about it as it comes up for you, as it evolves for you, without anyone insinuating that really you should be over this by now. It leaves scars that can be ripped open years later.

As far as giving more information, there is SO much out there. RESOLVE (www.resolve.org) has a wonderful array of articles and links to support avenues. Melissa at www.stirrup-queens.com has informational posts and articles, as well as a blogroll of many people who are going through different aspects of infertility, loss, and adoption, all organized by topic. For people who found resolution through living child-free, there is a wonderful blog, http://nokiddinginnz.blogspot.co.nz that posts about Mali's own experiences with living childfree after a difficult infertility journey, and wonderful posts that are applicable to anyone in any aspect of this journey, as well.

Reassure the person that this is not their fault. (Do not judge.)
Mental illness has a stigma, as does substance abuse. As the instructor of my class stated, it's just not about the drugs, or the alcohol, or the food (or lack thereof), or the cutting. It's about the pain that's being somehow soothed by those behaviors or at least blocked out. No matter what mental illness a person is struggling with, it is NEVER their fault, but often the person feels that way.

Ditto, ditto to infertility. People may say such idiotic things as "if only you hadn't waited so long," or "well, it's harder to have babies in your late thirties," or "didn't you used to smoke?" or "well, you do enjoy your wine...shouldn't you give that up if you really want this to work?"  All of those imply that it's somehow YOUR FAULT. Even choosing NOT to go dairy free, as I did (since as a celiac I felt I had restriction enough in my diet and the evidence in the research went both ways on dairy and fertility), left me feeling judged, like somehow I just didn't do enough. If I exercised. If I didn't exercise. If I had a glass of wine (or three) in my month off. All I have to say is, I did Egg Boot Camp, and it STILL didn't work. Which was strangely freeing, because I couldn't really blame myself anymore. We blame ourselves plenty, we don't need people insinuating that there is blame to be had somewhere along the line. I can't control any of the things that may have contributed to my infertility -- I can't go back in time and stop myself from microwaving those Chinese takeout plastic containers, or smoking those social cigarettes of my twenties, or magically have met Bryce in my twenties instead of my early thirties. And it's frustrating, because while we analyze everything ever done in a lifetime for signs that THAT's what caused the infertility or doomed the cycle, there are tons of people who do drugs and get pregnant, get pregnant without assistance in their 40s, eat like crap and still CARRY HEALTHY BABIES. Even, gasp, former smokers manage to conceive and give birth, and their children don't have three eyes or anything.

Sooo, that reassurance that none of this is your infertile person's fault... it goes a long away.

Do not compare your experiences to the person's in crisis. 
For youth in mental health crisis or challenge, this means not demeaning their experience by saying things like, "When I was your age, I had it much harder," or "You'll be fine, I made it through, see?" or "You have so much more than I did at your age, what could you have to be depressed about?"

This is a hard one for applying to infertile people, because often, it's other infertile people who want to tell you all about their own experience.

I think it's out of a desire to be helpful, to pay it forward, to take your own successful experience and try to help someone else by showing them that this could be the way that you, too, get pregnant. Except...except everyone's body is different, and everyone's threshold is different, and something that worked great for one person may not work at all for another. I know that for me personally, by the end of my fertility treatment leg of the journey to parenthood, I was tired of people becoming successful and then preaching all the things that made them successful. "You were just LUCKY" I would say under my breath through the tightest of gritted teeth. I felt ungrateful, because it's meant to be helpful. But for someone who's already tried so much and just not found success (and may never find success in this avenue), it doesn't really help. Better to listen. Better to ask open-ended questions, like, "what have you tried?" or "what do you think your next steps are?" I try really hard when I share information with people who are at a different point in this journey from me to always give the caveat that "This was MY experience, and what worked (or didn't) for me may not apply to you." I try, at least. Sometimes this advice is welcome, and sometimes it isn't. You have to pay attention to the person you are communicating with, supporting, listening to.

As an infertile person who tried a gazillion different ways to make this work and none of it ultimately did, I have to be super careful not to give the impression to people who want to talk that my way was the best way to go. I heard so many people tell me that they got pregnant on their LAST cycle, or that the 9th one was the charm, and that you just have to KEEP GOING and NEVER GIVE UP. But for me, 5.5 years, 13 cycles, and 27 embryos later, I still had nothing and my ability to hang on to sanity and functionality was as diaphanous as a single spiderweb thread. Strong enough to support me crawling along on it, but just as easily broken. Those statements made me feel like I had to keep going, like it was a failure to "give up." In actuality, by continuing down a road that was incredibly difficult and fruitless, I was traveling FURTHER from parenthood. When I talk to someone who is going through infertility and has asked to hear my story, or has heard my story and thought I might be a good person to talk to, and they say, "Well, I haven't tried as much as you have..." I just have to jump in and say, "My way is NOT necessarily the best way. In fact, I would argue that going my way and exhausting just about every avenue was NOT the best way at all. I kind of wish that we had pursued adoption two years earlier." Now, I wouldn't be as at peace with the decision to go forward with adoption if I hadn't pursued everything we were comfortable with...but that was what was right for us. In no way do I ever want anyone to look at my story and think, "That's the way to go! Exhaust yourself in every way possible and THEN move toward a more ultimately hopeful option (although not by any means an easier option)."

Also, sometimes well-meaning fertile people will tell you how they tried for six months or a whole year to conceive and it was incredibly difficult and they know just how you feel. This may have truly been difficult, but the experience of trying through sexytimes, no matter how timed and scheduled and charted, is very different from trying with a host of medical professionals in the room, no sexytimes necessary, but a closet full of different sized needles as a requirement. It feels like your difficult situation is not being honored, like maybe it's being trivialized just a smidge. It's like telling a clinically depressed person that you've been depressed loads of times, and you just went and bought shoes and felt just fine after a good cry. Kinda different from having a crippling mental illness that puts you in a pit of despair and/or apathy that seems neverending and binds you to bed or the couch or even the floor. So not the same thing. Even if you've had a very similar situation, sometimes a person just wants to get her own story out, her own feelings at the time exposed, without comparison to someone else's.

The upshot for this one is that no one truly knows JUST HOW YOU FEEL. All of our experiences are a culmination of all our previous experiences, and everyone has different layers of complexity even if your diagnosis is exactly the same. While it can be so incredibly helpful to know that you are not alone, and that others have suffered similarly to you, there are times where you just want to feel validated for your own, unique, awful experience. Just saying "This sounds so hard," or "What do you think you will do next?" or opening up questions to your experience by saying, "Do you have any questions right now for me?" will allow your infertile friend/family member/acquaintance to make the call if she/he wants to hear about your experiences at this point, or just needs to be listened to.

Do not make promises you can't keep. 
For youth going through a mental health crisis, this may mean telling them they'll be home tomorrow when they're being taken to the hospital for a suicide attempt or plan. You don't know that. It may be saying you'll be available anytime, but really you can't answer your phone at any time and be present for the person. Or it may mean saying that everything will be okay, when really you can't promise that. You can promise that things will get better and you can help come up with a plan for that to happen, but you can't promise an endgame. There are no crystal balls.

Same is true for people struggling through infertility. It takes a great deal of self-control for me not to seek out every person who told me, "You'll get pregnant, I know you will! It will happen! This is THE cycle, I just know it!" and remind them that these prophecies failed to come true. I hated hearing "It'll be your turn soon," which I heard MULTIPLE times, even as people were getting pregnant with their second and THIRD children around me. That one is just patronizing. And implies that there's a queue, that I just haven't gotten in the right checkout line. It's placating but has no truth behind it. It makes the person saying it more comfortable though, and kind of shuts down the conversation. Which is not helpful.

Sometimes, as I mentioned before, you just want to live in negative nellyland and wallow in the sadness of your latest loss/negative/bad test/poor prognosis/failed match/call that you weren't chosen. When you say, "This is awful and I don't know if I'll ever get pregnant/have a baby," and someone responds with, "Don't worry, it will work out! You'll get pregnant!" it feels like you're not being listened to. It feels trite. There's no evidence of that. A better response, and one that I received a lot towards the painful end of our journey, is, "You must feel so sad and frustrated." Or just "hmmmm" and letting me continue to moan and let all my dark feelings out. Because when you have A LOT of dark feelings, and you really want to get them out of that pit in your chest, the last thing that is helpful is being told that essentially you're being dramatic and it will all be just fine. Because for some people, you will get pregnant and it will have been an awful journey, no matter how short, to get there, but you will get your happy ending. And for some people, you won't get your happy ending no matter how many years you try or how many therapies you put yourself through or how many embryos you transfer. You have to find a new happy ending.

I love the saying, "Everything will be all right in the end. If it's not all right, then it's not the end." This gives hope, but also acknowledges that YES, it's okay if everything is not all right NOW. It's not trite. It's a good one.

And I hate, hate, HATE the saying, "Everything happens for a reason." It's another trite, mean-nothing phrase that shuts down communication. Although for me, I responded poorly to this and would snap, "What POSSIBLE reason is there for this pain? What POSSIBLE reason could there be for a meth addict to be able to have six kids and I can't have ONE!" Or substitute any other situation that is hideously unfair. Such as, in my mind, getting pregnant at the same time as someone else who was ultimately successful and has a toddler and I ended up with nothing (yet) and am filling out gads of paperwork and putting my life on display so that we can have our precious FutureBaby. How were our lives different? What was the reason that one of us had joy and the other had to suffer? It lends too easily to the whole examining yourself for fault and feeling responsible somehow for your body's failings. So, uh, stay away from this one. Even if it makes sense within your faith, this statement really, REALLY doesn't have a place in a moment of crisis.

I even went to a second opinion at a clinic once where they said, "We WILL get you pregnant, it's just a matter of how much you're willing to endure." HOLY CROW. Way to put it on the patient. And if you don't get pregnant, it's really because you just didn't try hard enough. That made a really, really negative impression on me, as a promise that just can't be kept. Because infertile people as a group are pretty vulnerable. You tell me to do a treatment that's experimental and costs thousands of dollars because it might work? I'll do it. You tell me to ingest hundreds of dollars of herbs each month to optimize my system? I'll do it. You tell me that I need to have this fertility charm in my home and dance naked at the full moon in my front yard while brandishing it and emitting a primal howl deep from my uterus? I WILL DO IT. So the promise of We WILL Get You Pregnant really rubbed me the wrong way. No one can promise you that. My first clinic was very clear that it might not be possible. I did not want to hear it at the time, but now I respect that so much. NO ONE CAN PROMISE YOU A HAPPY ENDING.

So, don't make those promises, even if it seems like it would make the person feel better in the short run (or make you feel more comfortable by covering that raw and oozing wound the person is showing you with a cheerful Hello Kitty bandaid). Just give them hope that someday, some way (and maybe not the way they imagined), it will be better. And in the meantime, acknowledge that it's just so, so hard.

Provide positive feedback and look for and acknowledge the person's strengths.
For youth in mental health crisis, it's important to latch onto something positive that they have said or done, because youth are told so frequently that everything they do is wrong, and now they are experiencing something painful and misunderstood and it can feel like NOTHING they are doing or can do is right. One example from the handbook was, "I'm glad you are willing to talk to me about this--it shows a great deal of maturity." If you are feeling weak and like your world is ending, hearing something positive about yourself (not a bland "think positively!" or "you are such a nice person") can go a long way to opening doors of communication and helping you to feel less hopeless.

Same for those challenged by infertility. As I've mentioned above, there are so many ways to interpret your own weaknesses into this. You feel like a failure. You feel like your body is a failure. You may feel like your ability to parent is questioned cosmically. Hearing someone say, meaningfully, "You are really giving this your all" or "This is so hard, and I am so glad that you are open to talking about this with me" or even something so simple as, "You will make the BEST mother/father because you are working so hard to make this happen. However it happens, you will be great." If the person may not ultimately become a mother or a father, if living childfree becomes the chosen or only option, then acknowledging that the person fought hard and there is hope after trying to build a family and then not having that become a reality. It can be hard to grasp in the moment, but through infertility so much pressure is put on you to be the best would-be mother, to be the best receptacle, to put your best potential parent forward in your profile book... and if after all that you ultimately won't be a parent, you need reminders that there is so much to you than your uterus or your ability to parent a child within your own nuclear family.

To be honest, I really needed reminders that there was so much more to me than my daily shots and my lining thickness and my estrogen values. That outside of all this, I had value was so important to hear. I didn't want to sound like or be treated like a victim. And, contradictorily, I didn't always wanted to be told a blanket statement that "You are so strong" or "I could never do what you're doing," like I was doing something amazing by trying to reach my goal. In my mind, I felt like I was only as strong as I needed to be in that moment, and that moment kept changing and getting harder, and so I had to adapt. Sometimes it was nice, and sometimes it felt somewhat insincere, like that bandaid. But that was my problem. I think you have just pay attention to the body language of the person you're talking with. Which leads to...

Watch your body language [and the other person's].
When talking to anyone in crisis, you need to have open body language. No crossed arms, eye contact (unless that's culturally a no-no), no standing over someone like you are the authority figure (so important with youth). You want to have a welcoming posture, make eye contact but not so much it's creepy, and be at the same level as the person to get rid of any thoughts of one person being more authoritative than the other. Palms out is always good (gives that "I welcome you" feeling) and a nice calm, low voice.

I would also argue that it's important to pay attention to the person you are talking to's body language in either situation. If the person you are talking with crosses their arms, maybe they feel disrespected at that moment or like they aren't being listened to. If their eyes start to wander or they look like they are fading out, maybe you've been talking too much and you need to bring it back to them. Or maybe you could say, "Do you want to talk about this some other time?" Because as much as I wanted to talk about my infertility and how awful it was, there was a limit to how long I could do that, and sometimes I was the one who wanted to switch topics to that movie. You can get saturated.  If the person looks irritated, feel free to ask  "Did I say something that offended you?" There are a lot of misconceptions about infertility and adoption, and it can be easy to put your foot in it. I always appreciated when people did that inadvertently, picked up on my response, and then wanted to understand why what they said wasn't the best. It showed a genuine interest in wanting to know more. And wanting to know more shows that you care. I find this with adoption, too -- I love, love, LOVE when people ask questions and even when they preface with, "Is it okay for me to ask this?" Asking questions means you care. Period. It's up to me to say, "We're not sharing that information right now," or "That's private," or "That's simply not true, and let me explain why..."

Be okay with silence.
This one is so important. Sometimes it's just too hard to get the words together, but you have them lurking under the surface, and if you're not given enough wait time, the opportunity to share something really painful or a deep seated fear that you want to get out of you can pass. Be okay with just sitting there with someone who is either the youth in mental crisis that this training was meant for, or a person struggling with infertility and related concerns, and just being there with the person. Sometimes I would cry and just want someone there to hold my hand or give me a hug or just witness my pain. Sometimes I would be so numb that I couldn't cry, but I still needed someone with me in that space of gathering up all the tiny shards in my head and my heart while I put my words together. Sometimes you just need someone to be there while you feel all those awful feels. It is so amazing when you can find someone willing to sit in the uncomfortable silence with you until you are ready to begin talking, or resume talking. It is hard, so hard, for the person who is not in crisis. You want to fill that empty space. Resist the urge. It's okay. Just being there is enough.


Can you see why the parallels were so striking to me? It's kind of amazing that I didn't cry during this section of the course, because it was just so fitting. I am in no way a mental health professional, even though my certificate says I can provide initial help to young people experiencing mental health problems, I am NOT an expert in this field, not by a long shot. But I am an expert in how I felt and continue to feel through this journey of becoming a parent, and all of these tips for communicating really resonated with me. Someone once told me, "It's not like there's a guidebook for how to talk to you!" after admitting that she hadn't asked me about infertility during her pregnancy because she just didn't know what to say and had a little guilt that her situation was so different. Well, here you go... for all the people who didn't or don't know what to say. Here is a guidebook of sorts.

Saying something, being there, and most of all just LISTENING...it has a value that is just not measurable. This is an experience that can make you feel so isolated, so alone, and so misunderstood. Hopefully having tools to help you communicate with your friend, family member, coworker, acquaintance, etc. will make a huge difference to that person in your life, and to you as a friend.

Original tips come from Youth Mental Health First Aid(r) USA, (c) Maryland Department of Health and Mental Hygiene, Missouri Department of Mental Health, and National Council for Community Behavioral Healthcare.

3 comments:

  1. Very interesting comparison and thoughtful post

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    1. Thank you... this one just ate at me and ate at me until I got it all out. Thanks for reading the whole thing... :)

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  2. The section that stood out to me was the one about just keep trying, everything happens for a reason (section four, I think, Do not compare your experiences to the person's in crisis.). What I've found, and in fact, still find, difficult to read/hear is the "it's worth it--keep trying, you won't regret it" and "baby made the wait 100% worthwhile." A few days post baby, of course he's worth it, of course I wouldn't trade him for anything, but it doesn't make the waiting less painful, it doesn't mean you should keep trying to the detriment to your mental health and/or relationships. I love this baby with all my might, but it doesn't make the pain and losses that came before less real.

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