Several bloggers have talked about past griefs and upheavals and how it's helped them cope with their current infertility. And that's not to say it was always worth it. Some lessons just aren't worth the teaching. Nevertheless, at times like these you come to see these tiny, silver linings on that long, black cloud. For me the long black cloud was my mother's breast cancer.

To put it bluntly, my parents handled the whole thing badly. It took an awfully long time for our family to repair the fallout from that episode, and thank God we had the chance. During the seething years that followed her illness I nurtured a fervent wish to come down with some horrible, life-changing medical problem, just so I could show them how it should be done.

I know - serves me right, huh?

You see, I believe a patient has responsibilities. Responsibilities towards those who want, and try, to help. Responsibilities which, if carefully observed, will be rewarded a hundred times over in the kindness of friends and family. Because let's face it - even those who've walked in your shoes can easily forget what it's like. The rest have no hope. And few of us are lucky enough to know that one-in-a-million person whose talent it is to soothe. So if you can stand being lectured for a moment or two, I want to give you my opinion on how to be a model patient.

The biggest mistake my parents made was withholding information(1). We were given the barest essentials - less, I would say, than the essentials. Our parents would retreat pointedly to their bedroom to discuss specifics. Conversations were whispered around us. My mother was "going out" today. She would "be in hospital for a few days". With a few extra words we could have been told, quite straightforwardly, that she was having chemo, undergoing surgery, being treated with radiotherapy. Questions were not invited. Any sort of curiosity about the subject was actively discouraged. Yet when our behaviour clashed with my mother's treatment - when, for example, I asked to go out in town with friends in the middle of, unbeknownst to me, my mother's radiotherapy and high risk period for everyday infections - well, let's just say things went badly for me. The lesson is this: in order to demonstrate care you need to know there's a problem. And the more educated you are about that problem, the more likely you are to succeed in helping. As a patient, you have a responsibility to provide people with the information they need to support you. You have no business getting angry with someone who doesn't know better, unless you've first tried to make them understand.

Of course, it can be hard to rehash every aspect of your latest treatment to everyone who remembers to ask, and nobody wants to give a Problem X 101 lecture or Q&A session to every new person they tell. You need to provide this information in a way everyone will feel comfortable with. A list of resources to consult, or an appointed "public liason" officer who is equipped to pass on news and answer questions. Someone who can give out advice on what to do for you, and when, and how.

You also need to spare a thought for how your supporters feel. Perhaps they're not hurting like you, but hurting they are. Hurting, and feeling bad for focussing on themselves in your time of need. You need to give them permission to process how they feel about this. Permission to turn to someone for their own support. If you can find the energy to care for them a little, you will get it back in spades when they return, refreshed, to care for you. When my mother had breast cancer, we had no-one. Shortly after her diagnosis, she sat us down and theatrically ripped up a Kid's Helpline poster, saying, "If my children have problems, they come to me and no-one else." It was as if she was afraid, already, of disappearing from our lives. In the end the person she hurt most was herself.

Lastly, you have a responsibility to direct and correct the help you are given(2). No-one will learn how to treat you unless you teach them. Don't make them guess, and don't let mistakes become habit. Give clear and specific directions, and if people do something wrong, correct them kindly and immediately. Then praise them for trying. You don't need to get nit-picky - if they're improving, reward them and leave it at that. Next time you can expect better again. It sounds tiring, but it's less tiring than seething in resentment over inappropriate remarks. If you can't summon the energy to explain yourself, you need to tell people to leave you alone. When you do this, ask them to check back in at a specific point in the future - tomorrow, perhaps. Or simply ask them to talk to you only via your liason officer. Far from thinking you demanding or ungrateful, your supporters will be relieved to know where they stand. Believe me, I know.

For my part, I think I'm doing ok. Not "model" perhaps, but it's clear I've gained something from what our family went through. And it's worth it. For everyone. Especially for me.


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Today is the day I would have been due if our first pregnancy hadn't been "chemical".

I'm not saying this because I'm having a hard day. There is no unresolved grief here. Still, it didn't seem right to let it go by without mention.


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(1) I feel I should explain here, because it sounds like I'm making an in vs out of the closet argument. Most people don't know about our IVF, and I'm happy with that decision. Moreover, those that know don't know everything. We don't generally give them cycle dates dates. We don't discuss our diagnosis. I certainly don't give my mother daily cervical mucous reports, complete with details of whether there could be any "semen confusion" or not.

The point I'm trying to make above, is that you should give someone the information they need to support you. Or else stop expecting their support. For example, you might just want to tell them you're having a difficult time at the moment, and are expecting it to continue for a while. You might want to say it's about infertility, but go no further. Or you might say you're doing IVF. There are resources which address all these levels of detail, from general-purpose supporter tools to books on the medical process of ART. I don't think you should be more specific than you feel comfortable with, I just don't think you should leave them hanging.

I also think if your situation directly impacts on someone, they have the right to extra information. If your mum is taking you to the hospital for your retrieval and looking after you for the week afterwards, you really need to explain a few things to her so she's equipped and organised to help you. That you're having an IVF retrieval, for example. In other words, you need to give them a level of information which is appropriate to the level of support you're expecting from them. In much the same way I thought I, as someone living with a cancer patient, had the right to know they were having chemo on a certain day. When someone goes through pre-treatment stress and post-treatment sickness, it has a direct impact on their interactions with those living under the same roof.

I also think you should encourage people to ask questions (but not to expect answers). Asking questions shows they care and want to find out how to help you. People generally respect non-answers such as, "That's not important," or, "I don't really want to go into all that." If you give these non-answers, make sure you actively affirm it was still ok to ask. The important part of the dialogue - the subtext of showing you care enough to keep up with each other - doesn't need details. (Ok, you can go back.)

(2) As in, for example, the help registry. (Ok, and back.)


18 Comments

VanillaDreams said...

Well, happy birthday, little embryo that didn't make it. (hugs) I'm glad, Bea, that you don't have any unresolved grief about it, but I still think it is nice to acknowledge these things. All part of the journey, I guess?

I know I feel completely differently about the twins' miscarriage than I do about the blighted ovum/chemical pg/miscarriage that I had in August. I totally hadn't "bonded" or "attached" to that pregnancy, so I feel that I don't have any lingering pain over the August pg. But the twins' m/c will be with me forever I think, but at least time does help...it doesn't heal all wounds, but it helps.

Anyway, I hope you are doing well, and that very soon you will have a brand new due date that you will be able to celebrate for real! :) I really, really wish this for you.

Thanks for all of your support on my current embryo transfer. It helps a lot!

Talk to you soon,
Nilla
xx

Mands said...

Hey Bea, I totally agree with you about being in or out of the closet, so to speak. I would not give out any info to my family, then got upset when they didn't handle me with kid gloves. I have come out, and the blog is an excellent way of "teaching" them how to treat us, and answer all of their questions without feeling as though our privacy has been trampled on.

Bea said...

I should clarify that I'm not fully out of the closet, by a long shot. These are the responsibilities I believe you have towards those you choose to tell. In fact, one of the reasons I haven't told more people is that I can only handle so much responsibility.

Bea

Aurelia said...

Wild story about ripping up the Kid's HelpLine poster. I used to fundraise for the Canadian version of that service...
Interesting idea, about letting people know what's going on, I wanted to ask how old you were when your mom went through the treatment? Just because my son was very young when we lost our next one, and over the years things have changed in terms of how we have told him what was going on. At 10.5 he can understand a lot, but I haven't told him every detail.

Piccinigirl said...

sometimes you write and it just touches me in my heart, makes me really think about things differently and in a way that I wouldn't before. Thank your for that, because it helps me in this journey.
I am sending big hugs today and I hope in some small way they comfort you. I am glad that the grief is unresolved for you, it makes you fight all the harder for a new due date.

I am thinking of you, thanks for this post. it changed my day.

Lut C. said...

That does sound like a traumatic experience for you all. :-/

I like this post, it has nuance.

I'm mostly in the closet, especially at work. Only my supervisor knows I have 'a medical issue'. I consciously remind myself that I cannot expect understanding from people I haven't filled in.

I have set up a special e-mail address that my friends can put on their baby-pics mailing list. My husband filters them for me. So far, no one has sent me anything there, so we'll see how that works.

Bea said...

Aurelia - I was 14 at diagnosis, 15 at conclusion of treatment (it went on for about a year).

My 12yo sister also thought the information was too limited for her agegroup.

My 9yo sister didn't seem to have so many complaints.

Obviously, there's a lot of change between the ages of 9 and 15, and between individuals in this agegroup as well. I think the key thing would have been permission to ask questions (of some source), therefore helping set our own level of knowledge.

Bea

serenity said...

Good grief, I have wanted to comment on this all day.

I too would have been REALLY angry about the lack of information & holding me accountable regardless of it. I get angry thinking about how if affected YOU, actually.

I firmly believe that we have a responsibility to our friends and family as well. You can't hold people accountable for what they say or do without giving them some guidance.

We seem to be in synch in this as well.

Well said.

serenity said...

And because I thought it deserved its own comment... happy birthday, little embryo. I am sorry that you did not make it into this world.

Aurelia said...

Oh Bea,

Yes, 14 and 12 are ages where everything could've been explained, and they certainly should've made you feel welcome to ask questions. So far with our kids on our stuff, we've explained some and made it clear they can ask anything they need to know. (I just haven't gotten into areas like chromosomes, etc. at their age. I know it's coming someday.)

Oh I'm saying a prayer for you tonight....((hugs))

Baby Blues said...

Sometimes we keep information from others who care, just because we don't want them to worry. I couldn't freely talk about the hardships of our ART to my mom because she worries about the smallest things. I just feel I have to be strong for her. And sometimes being strong means not having to share your worries and fears.

TeamWinks said...

You have a lot in there to think about. Excellent post!

My Reality said...

Great post, Bea! You can only expect to get out of a situation what you put into it, the same goes with being a patient of any kind.

I wish your sweet embryo a wonderful birthday and know that the little one is being remembered the world over.

Bumble said...

Good post, I'm kinda out of the closet as much as I can be, but I try not to give too much detail anymore. I guess I want them to know what I'm going through for some reason. But sometimes they end up putting their foot in it by accident. My dad recently said something so horrible to me which he thought was a joke, that I can't even repeat it. So now, I'm very wary of talking about it with him anymore. He'll know when the baby is on the way and probably not before.

Happy Birthday to your little one for yesterday!

Twisted Ovaries said...

I'm not saying this because I'm having a hard day. There is no unresolved grief here. Still, it didn't seem right to let it go by without mention.

That was one of the coolest things I've ever read-my respect for you is huge on that. So many in IVF-land have due dates that will never be in their minds, and without question you have handled it in the calmest, most natural way I've seen yet.

Bea said...

Baby Blues - I know what you mean about trying to protect those around you, and there are definitely situations where this is the best policy. And very few people give out the full extent of everything they're going through - they put on brave faces, etc etc.

But you have to be careful your instinct to protect isn't doing more harm than good. The people who care for you will worry anyway. If it's obvious you're leaving a lot out, their imaginations will run wild. You *can* inform and reassure at the same time (even when it comes to explaining the emotional side).

Bea

Millie said...

this was a great post. I like the idea of a liason officer.

I think that loved ones also have some responsibilities. I know the ones who care the most about me did a lot of research on their own. I didn't have to explain ivf...or worse an ectopic pregnancy when I was in the midst of it. I'd given some information but they took the time to educate themselves. Unlike certain inlaws who made it all about them.

I'm so sorry for the 14 year old Bea who had to learn way too much the hard way.

Ellen K. said...

This is one hell of a good post, Bea. Thanks for writing it!

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