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I’m an ARU patient and I am not ashamed of it. No one should be

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Comment: Lucy Stephenson

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LOCKDOWN affected so many things, much of which has been well publicised – schools, businesses, exams and events. But what about the personal stuff that hasn’t been spoken about? That has taken its toll too.

For example, as we went into lockdown my husband and I were half-way through a latest round of IVF treatment. The cycle – which would have required at least one visit to London – was cancelled, the clinic closed, the drugs I had injected into my body day after day wasted, and so far no one has sent me a bill for it – fingers crossed it stays that way because this stuff is really expensive.

I’ll spare you all the details, but basically I suffer from something known as secondary infertility – I’ve had a child naturally, and now I’m struggling to have a second.

Yes, that really is a thing, and exactly why it still isn’t appropriate to ask someone when they are ‘having the next one’ – just because someone has one child does not mean they can always have more.

For me, it’s all down to a condition I didn’t even know I had until I started trying to have children called polycystic ovary syndrome. It is estimated that it affects one in ten women of child-bearing age and is a major cause of infertility.

Today, I’m choosing to speak out about my experience to add to the words of Constable Karen Shenton-Stone, who yesterday called for a community-wide conversation about infertility.

The Constable, who suffered with infertility herself, wants to break down the barriers and reduce stigmas, and she has raised some major concerns about the future of the Assisted Reproduction Unit which helps people like me and hundreds of others each year in Jersey.

It is a particularly poignant message, not only because of her personal experience of infertility but because she campaigned and fundraised to get the ARU set up in the first place, back in the 1990s.

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I’m hoping that by talking about my own experience I can add to that conversation, and perhaps inspire others to better understand this important, yet rarely talked about in public, condition. Some may feel they want to share their own experience too.

Last year dozens of babies – 5.2% of the 880 born in the Island – were born following treatment with ARU. Without that unit Jersey’s birth rate would have fallen even more than it already did.

But also without it, there would have been increased levels of mental-health problems among the couples or individuals – the World Health Organisation says that single people have a right to have a child too – who are affected.

Because infertility is brutal. It’s relentless. Treatment for it is intense, time-consuming and takes over your life. If you get as far as IVF, the process can only be carried out in part locally and trips away, often with only a day or two’s notice, will be required. Part of the process requires a general anaesthetic. And it takes a toll on both partners.

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It’s also crushing when it doesn’t work, or when it does but you suffer a miscarriage. I’m not sure what feels worse, knowing it can work but still not getting a baby at the end of it or your body failing altogether to do what it is designed to do even with the help of some of the most magical science on the planet.

And, as I have said before, it can be expensive – too expensive for some. IVF cycles cost thousands of pounds a time and there’s the travel and accommodation on top of that.

In Jersey, only couples with a joint income of less then £34,000 get help with the cost from government, although the rest do get their drugs paid for if they are under the age of 40.

Really worryingly, though, infertility can have a severe impact on men and women’s mental health, self-esteem, relationships, even careers.

I have known women unable to attend family parties for fear of having someone ask them when they are going to be ‘popping out a kid’.

I have known women give up their jobs because of the toll of infertility treatment and the relentless appointments, scans and trips to London.

I have known couples persevere for round after round after round after round of gruelling and expensive IVF. Some have been successful, some haven’t.

I have known gay couples have children thanks to ARU. I have known straight couples have children thanks to ARU. And I know that there are some who, heartbreakingly, haven’t been able to have any at all even with treatment.

There are couples due to start treatment this month, there are those on the verge of calling it quits, there are those just entering the ARU system, and there are IVF babies growing in their mother’s tummies as we speak.

There is much I could say about the processes, impacts, what we could and should be doing better on.

And, perhaps if this community conversation kicks off as I hope it does, I will return to some of these areas in due course.

But let me start by saying I’m an ARU patient and I am not ashamed of it. And others shouldn’t be either. Whether they choose to say that publicly or not is entirely up to them.

None of us, however, should feel at the mercy of the powers-that-be at Health who make the decisions on what services we can access, when and how.

We have the right to treatment and, if it comes to it as this service is redesigned, we will stand up for that right.

Lucy Stephenson

By Lucy Stephenson
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