The good and the bad

2016-02-05

Hi everyone,

As we get closer to our first attempt at IVF I feel that I must keep you (our supporters) updated with what’s going on.

I also wanted to chat about what I’ve learnt over the last year about infertility and the stigma around it.

As those of you who follow us and subscribe to our newsletter will know, we’re around £900 away from IVF number one and it’s just amazing!

I feel very proud of myself for not giving up, I am grateful and amazed for some of the outstanding support I’ve had and still have now.

Of course I am very anxious, one year and a bit to raise the funds is a long time and as we all know, there is strong possibility that it won’t work first time.  That’s not me being negative, that’s me being realistic.  I have to stay realistic and I am a down to earth as a person.

I have spoken to enough women in my situation during the last year, much younger than me, who have tried many times and for some have had to give up, to know better than to think it’s in the bag (or the oven).

I’m going to go into this with a positive spring in my step but also with caution.  IVF is physically and emotionally draining, just as infertility is. And as tough as the last year has been, it’s nothing compared to what’s coming, particularly the possible disappointment.

I’m not going to give up madebysteffieb as I’ve said before because it’s my little business which I have built as my own coping mechanism when I had nothing.

So, if IVF was to work, of course I will close my GoFundme page but not my business. I love what I do and I want to try to keep growing.

If IVF doesn’t work, well I don’t know.  I would like to keep going of course and try again, but being honest I’m not sure how I will feel and in July I’m 43.

Anyway, this hasn’t happened yet and we are not there.

Being realistic with how our fundraising is going, we still have a few months to go which is fine, because I need to get fitter and prepared.  So I’m on a diet and I’m starting more exercise next week with Shaun and taking vitamins!  Sitting on my bum making crochet all day for a year hasn’t done my figure any favours but it’s ok, now is the time to make a change.  Keeping up with promoting, making and entertaining is a full time occupation and so I have to make some time for me now.

A year ago I was very scared about blogging, in some ways I still am, but I know that the people who support me want to hear the truth and none of these people are judging me.  They accept that this is my reality as I accept and support theirs and therefore I find myself a little more at ease with telling it how it is.

Being “positive” everyday with Dotty takes its toll and I don’t write half as much as I should I know.  Since the New Year I have found it hard to get going again, getting closer to it is making me anxious, I’m not sleeping well and I feel quite hyper, so it’s time to put pen to paper. Or type so fast I keep missing words out!

I would like to tell you about a few things I have learnt about infertility and my view of how my campaign has developed plus some of my experiences in the last year.

I was chatting to a lovely friend the other day, a lady like me, who has already tried IVF and wasn’t successful and she reminded me again of how she hates the thought of people knowing about her “issues”.  She said “because of the stigma”.

To clarify what she was referring to, apparently according to some, if you can’t have a baby yourself, you’re not a real woman.

So, let me tell you, I am ALL woman and if you think I’m not then please stop reading.

My GP and my local hospital damaged my body and made me infertile, this isn’t something I caused myself, this isn’t anything anyone causes themselves on purpose.

Being a woman isn’t just about having a child in my opinion, being a woman to me, is still being here, standing and fighting with every fibre in my body for what I want to try and achieve.

Aside from the daily trauma I feel of being unable to have my own child, the second most painful thing I have found is being ignored.

I understand of course that not everyone can sympathise, empathise, whatever word you want to call it but trust me, infertility is NOT perceived as a worthy cause and the majority of people don’t take any notice.  It’s not fashionable and I still haven’t found anyone in the public eye who supports this cause, even amongst the ones who have had IVF and struggle with infertility.  Sure, some celebs do a magazine spread about it, how painful it is, how IVF makes you feel, etc etc. But that’s because they’ve been paid for it or it gives them exposure, perhaps even pay for IVF at Harley Street.

No one is getting down and dirty to argue the guidelines, the inflated costs, or just the fact that being infertile is a real b*tch.

I just don’t get it.  People in the public eye are getting behind everything else, Cancer, Alzheimer, Domestic Abuse, Mental Health, the list goes on and on.  And of course, they are all important and are causes I support myself, please don’t think for one minute that I speak badly of these causes or anyone who chooses to support them.

Public figures say they relate to these causes in one way or another.  Well I’m not the only one who’s infertile, so why don’t they talk about it? Support, highlight, choose to make the difference they can make?

There are a couple of organisations out there for “Infertility”, a few forums, but I don’t find that helpful.  It’s like locking yourself in a room with people who are “like you” and moaning about things being bad.  That’s not going to change anything.

Yes, I hate that the world knows I’m infertile, it’s so personal, and the fact that to a lot of people it doesn’t matter makes it even worse.  But if I hadn’t done what I did last year, I would either have been sectioned or worst! I could be dead and no one would know or care. (Except my family of course).

Some of you may remember fertility week this year.  I had spoken to the organisers prior to the week and offered my story of Dotty’s grandad getting married as a different take on things.  Something to smile amongst the sadness and in between everyone else stories, they were all for it. So I spend over 3 weeks building the story, taking the photos, making the video on top of my usual tasks and the week came.

To say that the network was unsupportive is an understatement.  It was poor, appalling, dam right disgusting and disrespectful.  I would like to remind the people who run these alleged “support networks” that they are only there because of women like me. They are funded (by grants and donations) to support people with infertility issues.  Yet that wasn’t my experience at all and speaking to other people who took part, they too were quite shocked at how little support they received.

It turned out the network was more interested in promoting a “fertility weekend” taking place at the same time. A “fayre” for infertile people to go and look at all the overpriced treatments and what they could have if they got themselves into debts or made 700 Cuties. They were advertising expensive clinics and rip off merchants claiming they can make miracles and “care” when really, once you’re in the clinic, unless you flash the cash, they won’t even speak to you.  (That’s our experience so far, no dough, no info).

They promised a week of support to get the word out, so I even stopped sharing the people who support me for a week (thank you for bearing with me) so that I could concentrate on the people like me who needed the support. There was very few of us and it was just one week. I got in touch with the “network” to ask why I wasn’t being shared by them and to say that I didn’t feel very supported. I’d worked really hard so I was annoyed.

I was told to quit moaning as they’d shared me once and I wasn’t the only person who needed help.  Well, if you can be bothered to look back on their week of supporting infertility… You’ll find that actually, they were just supporting the rich doctors who endorse them. In fact, if it hadn’t been for my faithful supporters helping out, all the work I did for that week would have gone unseen.

I’ve learnt so much over the past year, there are good and bad people everywhere (I knew that) some parents who are amazing, some parents who can’t stop moaning about their kids and couldn’t care less what I’m doing, they just want me to see their kids photos on Facebook *mute*. I’ve learnt that some people will jump on anything to make themselves look better but really are completely ineffective and sometimes hinder what I do. Allow me the cliché actions speak louder than words.

I’ve learnt who my friends and supporters are and that if I stop wasting time on people who aren’t I’ll get more Cuties made. I’ve learnt that Shaun is the love of my life, my rock and my hero and no matter what happens in the future for us, he will forever be in my heart as an amazing man.

I’ve learnt that some unrelated charities /causes will do anything they can to help in their own way, usually the ones who are struggling themselves and aren’t scared to mix it up and support me just because they like me.  And some think my successes are all due to them.

It might surprise you to hear that on a couple of occasions I have been in touch with other charities /causes to offer a Cutie, or a story.  Every time I have, I have always specified that I wasn’t doing it for myself but because I had been taken in by their journey and wanted to do my bit.  I also said I didn’t want people to make a fuss about it publicly because this wasn’t about me. Still as you know, I like to know the Cuties arrive at their destinations safe and I love to see them pop up online from everywhere.

So, tell me this, was it too much for me to expect to at least receive a message to say the Cuties arrived or the story was good or just a simple thank you? I really didn’t think it was too much to expect.

Some causes are extremely popular because they are “easier to promote” (as bad as this sounds, it’s what we all do).  Who doesn’t cry at a poorly child or even a poorly puppy, I do!

Imagine the advert about me; Steffie is about to jump off a bridge because she can’t have a baby. Stop moaning Steffie, adopt or get another cat. Steffie isn’t a real woman and she can’t get over it so she needs your help. Perhaps not…!

Infertility isn’t a rare thing, it affects 1 in 6 of us so why isn’t someone out there shouting it from the rood tops, why do we mostly hide behind closed doors.  What about the before, the during and often the after disappointment? And what about the future? In my opinion, the reason why infertility is not supported more and possibly kept “stigmatised” is because it’s is a very lucrative business.

Infertility often causes severe depression, like I have, and if I didn’t have madebysteffieb and you, as drastic as it might sound, there probably would be no Steffie anymore.  When you look at the news mental health is also a stigma and the resources aren’t always great but it’s a growing concern and it’s being highlighted. It is supported by a lot of public figures but of course they talk about their own issues and I am yet to hear of one person associating mental health with infertility.

In my case I’ve had nothing, my current GP always forgets I’m struggling with fertility (bless him).  Counselling has been appalling and of course now I know, I am definitely never going to part take in a forum discussion about infertility, promoted by people who just want funding so they can sit behind their desk and do nothing for me.

I’ve learnt that a lot of people will do anything for me, everyday for as long as it takes and I really hope that I show these people how grateful I am to them.  We have almost made it to one go because of me, Shaun, Dotty and YOU.

I don’t know if any of you watch Eastenders but I was really disappointed to see that the recent story on still-birth and infertility has been drowned out by an unrelated story about mental health.  Why did the writers choose to dilute a story partly on (secondary) infertility AND make the character’s husband have a baby with her best friend?

I know it’s drama, but I’m pretty sure that most women in my situation have a supportive partner or at least one who doesn’t cheat with their best friend!  And who out there has lost a baby or is going through infertility but would still put their feelings aside to care for their best friend who’s just had their husband’s baby? (You are a better person than I am and I’m a nice person).

It doesn’t make sense, I know its just Eastenders and it’s not real, but it’s not helping. If anything it’s demeaning infertility even more. The character already has a child which is a shame because although secondary infertility is very important, I have to remind people that if you already have a child and can’t conceive another it’s not quite the same as never having a child.

Still, as I know through a friend that is going through secondary infertility, it is still very painful, it makes me conclude that therefore the Eastenders’ character will forever be distraught by her loss and her inability to conceive again. She will also forever feel hurt by the sight of someone else’s new born baby.  And she probably wont get over it.  In soap land though she would probably have IVF, plain sailing and of course it would work.  The odds aren’t even 40% for young healthy women. The story has now ended by the character leaving without any real fuss about the subject of infertility.

Let’s make this more realistic as with the other stories.

I do wish that more people spoke up but I understand why they don’t, that’s why I think that if we had some kind of “ambassador” (can’t think of another word) on our side, perhaps things would change and fertility treatments would be better monitored.  Driven towards more successful results as opposed to just making money.

A few months ago I was approached by a TV company, a very excited man who was going to make a program about infertility.  He sent me a few emails about how urgent it was for him to get in touch.  He never called me back, there has been no program about infertility on TV, not about “normal” women like me. I also spoke to a lady journalist last year who asked whether I would be prepared to perhaps do women’s magazines – they pay (pittance).  I said no, that is the one thing Shaun and I agreed on from the start.

I know we need the money but I would rather make another 350 Cuties than skim over the impact and the struggle of infertility.  Just to be in a magazine until the next week’s edition and end up in a doctor’s waiting room three years later.   Don’t get me wrong, for some people it helps, but it’s not my idea of how to get to my goal whilst still maintaining some of my dignity.

Sometimes I wish a serious writer would write about what it’s like to be me and so many other women out there, we could get some real support and change some things so that we can live better though this, successful of not.  Not a piece in a magazine on whether I’m a real woman or judging women who go abroad for cheaper treatments or about celebrities who can pay for someone else to have a baby for them.

Oh last thing, to the charlatans out there calling themselves fertility advocates or life coach (really?) featuring a proud picture of their children on their desk… please keep your miracle cures. I’m missing bits that don’t grow back.

So, I’ll keep doing what I’m doing, stick with what I’ve learnt and the brilliant people who are still here today. You.

Thank you for reading x

 

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