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.)