Tuesday, July 18, 2006

How Can I Help? The Dos And The Don'ts Of Support

I found this on the RESOLVE website.

By Diane Clapp, BSN, RN and Merle Bombardieri, LICSW
Coping with Infertility can be extremely difficult for the family and friends of the couple going through infertility. As with any crisis it is difficult to know what to say. Because infertility is such a sensitive topic it is important to understand what you can and cannot say.
Let's start with what doesn't help, because the more you continue to say the wrong thing inadvertently, the deeper the rift will be between you and the couple. There is a universal list of

No-No's that most infertile couples agree on. The following do's and don'ts should help you support the individual or couple who is struggling with infertility.

Don't Try to minimize the problem by saying, "Don't worry. At least you have each other and don't have cancer."

I have heard that the stress of infertility is about the same as the stress related to a cancer patient. Right, at least I don't have cancer. I'm not dying. But, where is my "Be Strong" bracelet? Where is my walk to beat infertility? Why don't people come over to hold my hand when I can't get out of bed. No, I'm not dying, but somedays, I almost feel as if I am.

Do Listen to what the couple has to say about their experience and express empathy for their difficulties.

NOTICE: LISTEN... I don't always want advice... just an ear...

Don't Tell a couple who has had a miscarriage that it wasn't meant to be or that you know that they will be pregnant again soon and it will work the next time.

I have not had a miscarriage, but I know people who have. It is a death. Would you tell someone who's husband just died that he just wasn't meant to live and that they'll be able to find another one? I think not.

Do Realize that the couple has just lost a specific potential child who will never come again, no matter how wonderful the next pregnancy may be. Acknowledge how sad they must feel. Use the words "loss and sorrow"; don't be afraid to use the words that probably describe how the couple must feel.

Its been 3 weeks since our IVF cycle failed. I still feel this enormous sense of loss for these two potential lives. I still cry for them. Its very sad to think I've "lost" about 19 potential babies.

Don't Give medical advice or doctor referrals without being asked or hearing the couple say they are looking for new information or referrals.

I know people mean well... but, I have friends who tell me of this doctor who is great, or that my doctor is wrong. Unless you spent 8 years in medical school, I don't want to hear it!

Do Tell the couple know that you'll be happy to listen to any details they want to share with you and that you would like to offer support during any procedures by a phone call or by offering to go with them to a medical appointment.
There are so many times I just want to talk and talk and talk. Most of the time, I get the subject changed, usually to something happy like butterflies and rainbows, or tragedy like the genocide of baby girls in India. I feel very abanded at this stage. I'm not pregnant, I'm not undergoing any procedures, so my friends and family think everything is okay. This is the worst part; waiting. How I would love a phone call or an invite to go shopping... ANYTHING!!

Don't Assume that new medical breakthroughs you read about in the paper will solve the couple's problems. The breakthrough announced by the news media may be irrelevant and if it is relevant, chances are the couple has seen the article and their medical team is knowledgeable about it. One of my friends is cyber space just heard an article that stated women produce 6-10 eggs a month. Wow! Women are not dogs, we do not have litters of 6 babies! The media is often wrong.

Do Ask the couple if there are any books or articles that you could read to understand what they are going through medically. I think I would fall over if someone asked me what they could read or how they could get more information besides anecdotal stories of their friend's mom's cousin's step-daughter's sister-in-law who ate organic cucumber skins for a year and got pregnant. I have soooooo much information that I would LOVE to share. No one asks, though... Maybe I should just start posting information on the bulletin boards at the grocery stores...

Don't Expect the couple to act happy about attending baby showers, christenings and other family events that feature pregnant women and new babies. Oh my gosh... Just went to a baby shower and had to fight back the tears as I was surrounded by babies and the mom-to-be! Yes, I'm happy you are pregnant or you have babies. But right now, I'm fighting back the urge to steal your baby. My best friend had a great analogy; Its like going to a funeral for someone's husband and making out with your own.
I know people mean well, but no, I don't want to hold your baby or rub your belly for "good luck". This is NOT how babies are made. Trust me, I've read everything on baby making!!

Do Give them plenty of opportunity to decide whether to attend an event or whether to come late or leave early. They will not feel the need to avoid babies forever, but less contact right now may be a necessary part of their healing process. At this baby shower, I told the mom-to-be I would have to leave before she opened presents. Right as she was starting, she must have noticed the look of panic in my eyes. She hugged me and let me leave before I started sobbing. I will not be attending anymore events for babies in the near future...

Don't Start a discussion about infertility without paying attention to timing and to the couple's openness.
My husband did this the other night! We were out to dinner and relaxing with his parents, and he started talking about our doctor's appointments! Sometimes, I just want to be the regular girl I once was, not new unimproved infertile girl...

Do Choose a time when the couple's privacy is assured and ask the couple if they would like to talk. Couples experiencing infertility often feel out of control. Your letting them choose whether and when to talk about it gives them back some control. Out of control. You've hit in on the head!!

Don't Assume that it is fine if you talk to your son's wife or your daughter's husband about their situation.
My MIL told me a story about a woman who only ovulated once a year and once they figured out when she ovulated, she got pregnant. Good for her. I ovulate every month...I didn't want to discuss her son's sperm with her, but I really wish she would just give me a hug and tell me she will listen if I want to talk.

Do Respect the privacy needs of each individual and do not assume that they both want to talk about it with you. Will my husband talk about it? Nope. Except if its a Saturday night and he's out to dinner with his parents... Will I talk about it? Ummmm.... do I talk about anything else???

Don't Offer unsolicited stories about others who have been successful at treatment or adoption.
I hate these stories. They are not true. Most of these women probably went through infertility treatment and that's how they got pregnant, but don't want to talk about their treatments anymore. I highly doubt that the woman who tried to get pregnant for 8 years, had 15 IVF treatments, and 2 failed adoptions "miraculously" got pregnant with twins after she "stopped" trying. She just got tired of stupid comments from ignorant people.

DO Tell them if they are ever interested you could put them in touch with a couple willing to talk about their infertility experience or adoption process. Let them decide whether they want to pursue that information. As a parent, family member, or friend, you want to make it better for the couple, to take away the pain. But probably the greatest gift you can give your loved one or friend is to be a listener, a sounding board. Instead of erasing the pain, you can diminish it by your caring. One of the hardest questions to ask someone is, "How can I help you?" It is such a difficult question because you should be prepared for their answer and not the answer that you think they will say or should say. To ask that question and to
trust the response that you hear is a powerful step in your efforts to help the couple struggling with this kind of crisis. Amen!

It funny that the only people reading this are my Venting room friends who already KNOW all the Do's and Don'ts... Perhaps I should pass this along to my friends, family, and coworkers? Hmmmm....


Melissa said...

AMEN sister! I'll post it on every Albertson's bulletin board here...you hit up the other's in Chicago...then when we're done, I'll continue moving East, you move West, and we'll meet in the middle! Hey...wanna go shopping this weekend? :)

Dianne/Flutter said...

Joei.....thank you! That is one of the best articles ever and your comments, so true! Love you!

aah0424 said...

I love your responses to these Do's and Don'ts!

I think I would actually fall out of my chair if a well meaning friend asked me, "How can I help" Who would they be kidding they can't actually help in this situation? I would much prefer they say something like, "I just want you to know I here for you if you need me."

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