Tuesday, April 25, 2017

Things Your Infertile Friend Wishes You Knew

So your friend just told you she has some form of infertility. This is a moment in your friendship where it's time to listen to her and support her. She may or may not have told you specifics of her situation. It doesn't matter. What matters is that she told you because she trusts you. She may have also been so overwhelmed about telling you, for fear of your reaction, that she didn't think to tell you some of the things she wishes you knew all along, and hopes you will remember. Perhaps you were overwhelmed by the news to ask what you could do to be there for her as a friend.

This is where the list below may come in handy. While it's not comprehensive, it's a list of some things I wish my friends and family knew, and what my MRKH Sisters wish their networks knew. MRKH is a form of primary infertility I talked about in an earlier post that affects only women and mainly affects the reproductive system. In sum, according to Genetics Home Reference, "this condition causes the vagina and uterus to be underdeveloped or absent. Affected women usually do not have menstrual periods due to the absent uterus," though I'd like to point out that many still ovulate due to the presence of ovaries (we get the PMS without the period, yay! *sarcasm*)


This post isn't meant to sound preachy and it does not apply to everyone dealing with infertility. These are some things that are big no-no's, but if you learn that your friend(s) are not bothered by some of things then you know that line can be crossed. Keep in mind that it really depends on the person, and pregnancy in general is bothersome to those with infertility.

I realize that the following list is a lot to remember, so if you're unsure about whether or not something may bother your friend, ask her. Just the simple act of asking shows your thoughtfulness and caring, and that you listen to her. Your comments and questions are also welcome at the end of this post.

I am grieving the loss of my fertility - something I always thought I had

Grief is a lifelong journey. It's not something to simply get over or deal with immediately. Grieving the loss of being able to choose whether or not to get pregnant is real and painful. It's much like grieving a loved one because I'm grieving the children I dreamed of having as a little girl and may never have.

Sometimes a pregnancy announcement won't bother me a lot - I'll get small pang of pain, but it's not a big deal. Sometimes it will bother me more than usual if I'm already having a bad day and/or if it's the 5th one I've received in a short period of time.

I wish you'd remember me on Mother's Day, and my partner on Father's Day 
These are difficult days. Though I do celebrate my own parents and parent-like people in my life, it's difficult for me to not be reminded of my own struggle or inability to become a mother through pregnancy.

Other women may have miscarried and are grieving those children around these holidays. I grieve the inability to carry children.

Men are also experiencing this hardship. They are just as heartbroken, frustrated and disappointed to have yet another Father's Day come and go without a child of their own.

I found these tips from RESOLVE helpful on how to celebrate these holidays.

I need days (or weeks) alone to grieve
Please give me the space to grieve in my own way when I need to, and don't take it personally if it suddenly feels like I'm pulling away. It's not personal, I just tend to withdraw into myself and need time alone and/or with my partner to grieve.

Sometimes my grief comes on suddenly and unexpectedly when even the littlest things remind me of this painful struggle. Please respect my boundaries and allow me the space to grieve on my own terms.

I appreciate it when you listen to me
Even if you don't understand what I'm going through, be the friend you've always been and listen to me. Just knowing that you're willing to listen to what I have to say means the world to me.

I appreciate hugs and support, not advice
When we're discussing infertility or getting pregnant, telling me to just relax or just get over it or that I should(n't) feel a certain way are some of the worst possible advice to give. Why? Because they're unwarranted, and often incorrect. Instead, recognize that my feelings are real and valid regardless of whether or not you understand them. Recognize that I'm going through a difficult time, could use a friend, and give me a hug.

I put my feelings aside for others because I feel guilty
I feel guilty and ashamed that I am unable to achieve a pregnancy - something that is so defining of what it means to be a woman. It's taken me a long time to have accepted this inability as a part of my life and that I'm still very much a woman despite my body failing me. It's hard, though not impossible, for me to not feel guilty or ashamed. I don't want sympathy and I don't like feeling guilty, so I put my feelings aside for others.

I am sad for me, but oh so happy for you

While I am saddened by the reminder of what I don't or can't have, it doesn't mean that I am any less happy for you. I am so excited and happy that you're experiencing the miracle of life. I will do everything I can to be a part of your journey if you'll let me.

I still want to be included in stuff

Please still include me in things. I appreciate the gesture and knowing you still want me around. It also gives me the chance to decide for myself whether or not I'm up for it.

I feel like an outsider sometimes
MRKH women feel like outsiders when it comes to period talk. We don't experience periods the way that most women do. Although we do not have a uterus or normally functioning one, we still have functioning ovaries. Don't tell us we're lucky to never have a period because we still "experience the awesomeness of hormone surges, without the bleeding part," as one woman put it.

Also as an MRKH woman, I'll never experience childbirth and I don't want to be a part of these conversations because I feel uncomfortable and it's heartbreaking to hear about it.

Others with different forms of infertility who struggle to get pregnant and stay pregnant feel left out of pregnancy conversations too.

I wish you didn't complain about your pregnancy to me
I know it must be miserable being pregnant because it's why you're complaining. PLEASE STOP. If you know that I'm struggling with infertility, why are you complaining to me? It's insulting and disrespectful that you aren't considering my feelings, and heartbreaking because it's a reminder of what I can't experience. I realize that you must be going through a rough time, but so am I. Please don't be so selfish as to complain to your friend with infertility.

I wish you didn't brag about your easy and wonderful pregnancy to me
Personally, it doesn't matter why someone is talking about pregnancy - the word alone annoys me. This particular point doesn't bother me as much as the complaining, yet others feel the opposite. For me, I can be happy they're happy and still feel sad for myself. It's not so easy for other infertile women to feel this way.

When I was in my late teens and early twenties, I used to be more upset that someone is gushing about their positive experience. I want that used to ring through my head, along with why not me? As I hit my mid-twenties I started to accept that it'll never happen and I'm not as bothered by the positive experiences anymore. I'm also naturally attracted to positivety. 

I appreciate you telling me you're pregnant face to face

A close friend of mine from childhood waited to tell me in person that she was pregnant. She knew the importance of telling me this news face to face. It meant the world to me, and it wasn't nearly as painful as being told via a Facebook post or message, or text or even a phone call. She made it personal because she knows my infertility is personal. She recognized that her good news would be a heartbreaking blow for me, and it wasn't nearly as heartbreaking as it could've been knowing she remembered how painful it could be. Her respecting my feelings is a mark of a true friend.

Infertility still hurts even after adoption, IVF, or surrogacy

Thanks to another MRKH woman for mentioning this one. There is no cure for the emotional pain. Having a child is not the end all, be all solution to the emotional healing of infertility. While those with infertility are eternally grateful and happy for their children, it doesn't stop the underlying pain of the lifelong journey.

I know there are different ways to start a family
Another MRKH woman said it well, "I am clearly upset by my diagnosis, so I don't need you to tell me (like everyone else) that I can adopt, use IVF, or surrogacy. Unless I ask you for advice, chances are I know my options."

And yet another woman pointed out that, "it may not be feasible for me and my partner to pursue those options for a variety of personal reasons."

Comments like "there are other ways to have kids! Adoption or surrogacy!" are ignorant and hurtful. Even though that is true, both those options are insanely expensive, and adoption has very strict guidelines on who gets a kid or not. I/we may not qualify.

"You can be a foster parent! It could lead to adoption!" I know it's an option. I've thought about it and have either decided to do it, or I chose not to for a variety of reasons.

Dating is difficult, and an early infertility diagnosis makes it harder
When dating, it is difficult news to break to a potential partner. It poses so many questions such as how much do I tell them and when? Should I tell them all at once or in stages? How do I tell them my preferences of adoption or surrogacy, or neither? Another MRKH woman reminded me that as heterosexual women, we encounter a lot of men who are not okay with adoption because they want children of their own. I am sure that gays and lesbians encounter the same issue in dating, but I can't speak to that from experience or through others experiences. (Please comment your experiences if you would like to share).

I've had guys who are not okay with even pursuing gestational surrogacy to have a biological child, and it is okay they're not okay with it. In traditional surrogacy, the baby would be biologically his, and biologically the surrogates. The reasons why vary, and are even sometimes unclear. I think it's partially a matter of education and debunking the myths associated with surrogacy.

Please understand that this might be a big reason as to why I'm still single. I've often said it weeds out the assholes. The heartbreak of a break up doesn't get easier even if it's a good thing to decide sooner rather than later that infertility is a deal-breaker.

Also, making comments like "you'll find him/her someday" doesn't help when the real issue is the fear of being rejected because of infertility. I've had years to come to terms with this diagnosis, they have had much less time to process it. Some are definitely not okay with not having kids or the difficulty of having them, and some think I may change my mind about my preference for adoption over surrogacy.

Not all of us want to be mothers, but that doesn't mean not being able to choose is less painful.
It's because infertility is also an emotional struggle and grieving process. This doesn't need further explanation. See the grieving points above.

I wish you knew that because I don't have my own kids it doesn't mean I am free (or even want) to mind yours
This wish came from another MRKH woman, and while it wasn't necessarily something I would've thought to include, it's worth nothing that sometimes people assume that because someone is child-free, they're automatically available to babysit. In addition to the statement above, she said, "I want you to know that I fully embrace the child-free life and all it's benefits and in no way should people think it is okay to encroach on that."

I want you to know that other child-free women by matter of infertility and/or choice may get enjoyment out of doting on your children and that's their way of being part of children's lives.

I wish you wouldn't try to pawn your children off on me
Comments like "Well, you could have mine" aren't funny to everyone. I don't want your children, I want my own children, or those up for adoption, or I might be perfectly happy with my child-free life.

I wish you knew or acknowledged that my child-free life has just as much value as those who do have children

Although this can be applied to women who do not have infertility, I am still including it since infertility is often a reason why women and their partners decide to remain child-free. They may decide after years of struggling to become pregnant, or adopt or have a successful surrogate pregnancy that being child-free is the way to go.

Regardless of the reason(s) why, whether it's to focus on careers and/or not wanting to suffer through more attempts, or a multitude of other reasons, our child-free lives have just as much value as yours does with children.

I wish you understood the other ailments I have that are related to my MRKH
The reproductive system develops at about the same time as the skeletal and renal systems. Please understand that while infertility/MRKH is a huge part of the diagnosis, I may also suffer from other conditions. For me personally, I have congenital scoliosis that causes me a lot of back pain.

Many other MRKH women have kidney/renal issues including kidney disease or one kidney.

Someone may also have memory issues and/or fibromyalgia which both come with their own obstacles.

There are multitude of other issues related to MRKH, which makes it that much harder to deal with. We're all different. While we share the core characteristics of MRKH, our stories all vary - we may never meet another woman with the same exact characteristics and experiences as ourselves, making the feeling of isolation and loneliness that much harder.

I may have a different experience from your other infertile friends

What worked for them, may not work for me. Please don't assume that our journeys are the same. My MRKH journey is different from other women with MRKH, just as our MRKH experiences are different than those with PCOS, endometriosis, primary ovarian insufficiency (early menopause), and a variety of other infertility causes.

Are there any other things you wish people knew about your infertility journey? Comment below!

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