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The Sound of Silence : Investigating The Emotional Pain of Multiple Miscarriages

Say the word ‘miscarriage’ to a crowded room and you will hear a penny drop. It’s a reality that Tamsin Oxford explores as she investigates the emotional pain of multiple miscarriages.

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Miscarriage

Say the word ‘miscarriage’ to a crowded room and you will hear a penny drop. It’s a reality that Tamsin Oxford explores as she investigates the emotional pain of multiple miscarriages.

My name is Lucy and I’ve had eight miscarriages since I started trying for a baby in 2007. Sometimes I can’t remember why I’m putting myself through this or even who I used to be. Every time I fall pregnant I wonder, ‘is this also going to end? Can I really go through this again?’”

Miscarriage is a place that only those who have felt such a loss can see, where your heart mourns for a life that could have been and around it sits an invisible wall that makes you feel as if everybody else is on the other side. You can leap right out and say that you’ve just had root canal or a stomach ulcer, but saying you’ve experienced a recent miscarriage leaves a room silent, awkward and grasping at conversational straws.

“Our last miscarriage was just after Christmas and we bumped into a friend in the street who asked us how our Christmas had been,” says Annabelle Danton. “We both lied and said it had been fine, because if we’d actually said what had really happened, they wouldn’t have known how to cope with it and inadvertently made us feel bad for being so honest.”

Annabelle’s been trying for a baby since 2009 and experienced more than five miscarriages; her journey has been difficult to say the least. Multiple miscarriages produce scars that grow increasingly difficult to heal with each loss, and leave many feeling incredibly lonely. Almost every woman who stepped forward with their multiple miscarriage stories felt that they couldn’t talk about the pain they were going through, or open up about how scared they were about their chances of having another baby.

“Trying again was so difficult. All I could think about was that I wanted to be pregnant and how unfair it was that I wasn’t, yet as soon as I did get pregnant again I was petrified it would be taken away from me,” says Cathryn Scott. “That feeling has remained with me through all my pregnancies.”

Melissa MacKenzie agrees, “I remained completely paranoid throughout my eventual successful pregnancy. I thought that once I got to certain milestones I would relax, but I never did.” Some were as wounded by the physical act of miscarriage as they were by not knowing how to deal with how they felt, and the often callous attitudes of the medical professionals they met afterwards.

“I remember the first miscarriage so clearly and the worst part was that I had no idea what to expect; I didn’t know that foetus would fall into my hand with that last cramp and that I would literally fall onto my knees with the grief and horror,” says Lucy. “Then, when I went to the hospital for a check-up scan the next day I was expected to walk through rooms of newborn babies and pregnant mothers as if my ordeal was nothing more than a biological accident.”

Loneliness, isolation, grief, shame – these are the emotions tacked onto the end of a miscarriage as if the experience itself wasn’t quite enough. What can people do to overcome these in a way that is healthy and allows them to pick themselves up and carry on trying for a baby?

Susie Gower, the Becoming a Mama coach and founder (becomingmama.com), says, “It is important to acknowledge that this is a loss, a loss of not being pregnant, not having a bump and not having a baby like your friends. It is hugely important for you to talk and share how you feel, firstly to your partner and then possibly to family and friends.”

It is very easy as well to forget the partner in the miscarriage equation. Many feel as if they are left behind and don’t know what part they must play or how to react. Some, like Greg Marthwell, felt that it was incredibly selfish to be upset when his wife was going through a very physical and emotional ordeal.

“I pushed everything I felt to one side because I had this belief that it all about my wife, and that it was my job to be tough and strong,” says Greg. “Finally, months later, I cracked and told her how much it had affected me. I wish I had done it sooner. Instead of her seeing me as selfish and demanding, she felt less like she was doing it alone.”

Melissa adds, “My partner felt it very keenly; we were both equally upset when I had the miscarriage and I wasn’t afraid to share my feelings with him. I would definitely advocate talking about it with your partner. You might find your other half is trying to be strong for you but is glad of the opportunity to talk about his feelings of loss too.”

Sarah Bateup is an accredited cognitive behaviour specialist and clinical lead of PsychologyOnline, and believes that talking about the way you feel with people can really help.

“There are many reasons for feeling like you cannot or should not talk about a miscarriage,” she says. “Generally it’s normal to avoid talking about something that’s distressing – you might worry about getting tearful in front of people or seeming to lose control. Sometimes women are concerned that other people may not understand or will feel awkward or uncomfortable and should be encouraged to talk to other women or a healthcare professional.”

Initially there may be that all too familiar silence, but that is as much to do with your opening up about something that’s very painful as it is to do with friends and family not knowing how to react.

“I believe that unless someone has had a miscarriage they won’t be able to really get what you’re going through,” says Lucy. “That said, when I staggered through my first conversation about it, even apologising for it, my friend was amazing. She didn’t get it and she said some things that we all know shouldn’t be said, but it was obvious that she was completely on my side.”

Melissa agrees, “I actually never minded telling people I’d had a miscarriage. I know it’s a shocking word for some, but the more I told people the more women said to me ‘Oh no, I had one too!’ It might seem taboo, but it is one of those things that nobody talks about for whatever reason and, if you do, you’ll find many women who have been there as well and are happy to share their experiences and listen to yours.”

No matter how often or how badly a woman has miscarried she has something in common with others who have been through it, and it is in this grief that there is solace. What have other women done to cope; what are their mechanisms for getting through the day?

“For me it is about finding a way to live with the sorrow, accepting that it is part of my story,” says Annabelle. “That doesn’t mean I don’t live life and it doesn’t mean I no longer have dreams, it’s just saying that my experiences are what make me who I am today. Immediately after a miscarriage, when I’m feeling at my most raw and vulnerable, I have learned that I need to give myself enough space to grieve. You have to find a way to put one foot in front of the other – don’t expect anything else from yourself and don’t let others tell you when you should start feeling better. As an introvert I draw strength from the quietness around me, so in the early days I avoid social contact.”

She also suggests that women experiencing a miscarriage should focus on doing things that ground them like cooking bacon butties or gardening or going for a run.

“I want myself back, the woman I was before all the miscarriages started, so I’ve made a Living Bucket List of all the things I love doing that I’ve not been able to do over the past few years because I was trying for a baby or recovering from a miscarriage,” she adds. “At the centre of this is my husband. Recurring miscarriage really tests a relationship and we’ve learned to keep talking to each other.”

Ingrid Lotze experienced three miscarriageson the way to having her first child and she adopted a very philosophical approach; “The trick is to be in the moment; stay in the moment all the time and try not to dwell on what could have been, what should have been and what must be. Focus on getting well, focus on getting on with your life, focus on making another baby.

“Having a miscarriage is traumatic and sad,” she adds. “The experience is filled with horror, disappointment and ‘no!’ Every fibre of a woman’s being says ‘no’. Finding the ‘yes’ is how you heal and everyone’s ‘yes’ is different.”

Melissa thinks that it is vital to be honest and to not subvert your feelings, although she did find it helped to research the issue and discover more about the causes of miscarriage, as it reassured her that it wasn’t anything she had done.

Cathryn adds, “When people ask how you are feeling, the phrase ‘I’m bearing up okay’ really helps. Some people expect you to be alright a couple of weeks later, which was definitely not the case for me. Bearing up acknowledges that you are still struggling without having to go into great detail about how you are actually feeling.”

For many women the journey to having a baby, whether it’s their first or their last, can be peppered with the losses of unborn children, and it can be hard to pick yourself up and get back onto the baby making train. Susie Gower recommends a 30-second coping strategy that she devised for women to help them heal.

“With closed eyes, imagine you are holding a beautiful piece of ribbon attached to a large balloon. It can be any colour and size. Place inside this balloon your immediate worries such as ‘the train is late’, ‘I’m ovulating tomorrow’, ‘I hope this will work’, and then release the ribbon. Watch the wind sweep the balloon into the sky until it looks like a tiny full stop in the distance and keep looking until it has gone, along with the emotions you placed inside it.”

Remember, people may not always say the right things or give the right support, but they usually do hold your situation in their hearts.

“My parents told me a couple of months after my miscarriage that they had lit a candle that night in memory of what would have been their grandchild,” concludes Cathryn. “I was so touched by that. I thought it was beautiful.”

Seek the advice of women who’ve been through it ahead of you and use what you need to get through the days ahead. It isn’t easy, but you need never feel alone.

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Mental Health

Here Are Some Tips To Break The Invisible Wall

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The Invisible Wall

“Most relationships fail because we spend too much time pointing out each other’s mistakes and not enough time enjoy each other’s company.” – Unknown

Struggles through infertility can tend to take over your life. The constant stress of the treatments and the repeated disappointments can definitely strain the relationship between partners. Women may feel more irritable & emotional and her partner may feel helpless and worried. This makes for a difficult combination for any conversation to occur! Slowly there is an invisible wall starting to appear between the couple, emotions take over and make it even more difficult to talk.

With infertility, making a baby isn’t sexy. It isn’t fun. It’s stressful. It’s hard. It’s hormonal. It’s just miserable. The process truly is a make or break on relationships. Women can especially feel volatile just like a volcano about to blast at anytime with no warning. One minute you are positive, the next negative, becoming miserable, seemingly out of the blue. It can become exhausting for the partner quickly. The invisible wall gets thicker and taller… Sound and feel familiar?

Infertility can be an awful journey if the partners are not truly supporting and caring for each other. I have heard so many stories where partners are separating temporarily or permanently due to the stress and struggles with infertility. It doesn’t have to be that way!

Here are some tips to break the invisible wall…

1. To the woman who is in the thick of infertility, pay some attention to your partner. Ask them how they are doing. One of my clients asked her husband that very question on Father’s Day, and he broke down. Men also feel it, they just feel it differently.

2. To the woman struggling through this process, allow your man to be vulnerable. As a man, vulnerability with your partner doesn’t make you weak, it makes you even stronger. I have seen many relationships become very successful amidst the pain and struggles, when there is vulnerability between the couple. It strengthens your bond and makes you closer.

3. To both partners, when emotions are running high, remove yourself from the situation, take some time to collect yourself. Don’t talk or act when emotions are running high. The invisible wall gets higher when emotions are high.

4. Remind yourself and your partner frequently that “Together, we will make it thru this too”. Saying it out loud makes a world of difference and gives a great comfort to the other partner.

5. Get professional help, specifically someone who truly been there and understands the infertility struggle. They can help with tools and techniques to slowly eliminate relationship struggles, help identify the relationship goals and help you move forward positively in your life with or without successful fertility treatments.

Don’t let the invisible wall keep growing stronger and taller. Find ways to break the wall down slowly. Infertility shouldn’t be the reason for a relationship to break! Take small steps forward.

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20 Things You Should Never Say To Someone Struggling With Infertility!

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“You may never know what someone is going through, but if you notice any signs of pain—hostility, negativity, or over-sensitivity—then odds are, you know how they feel. Respond to the pain instead of judging the signs.” Lori Deschene

I have unexplained infertility and my fertility journey was very long and painful with almost 8 years of failed treatments. I had 3 miscarriages, 3 IUI failures and 8 back to back IVF failures. It was an emotional roller coaster. I struggled in silence for the major part of my journey. I avoided talking to people with the fear that they will ask me about having kids. I avoided going to India (where all my family is) for 4 years in a row giving all sorts of bullshit (pardon my language here) reasons on why I can’t go. I wore a mask at work and never talked about anything personal. Talking to friends and family members was a nightmare especially who recently became pregnant or had a child!

I always avoid telling others about my infertility journey to avoid the comments that can really sting, let my blood pressure rise and bite my tongue, to put it mildly. There are sometimes where I wanted to react in a more animated fashion to those somewhat insensitive and ignorant comments.

This doesn’t just happen to me. It happens to many of us who are struggling with pregnancy loss, primary or secondary infertility. I recently put a question (What is that one thing that people say annoys you most about infertility?) to an online FB support group and its members had overwhelming response talking about their personal experience with these insensitive comments.

This list is based on my personal experiences and the collective experiences from many amazing souls going through fertility challenges including my wonderful fertility clients.

I am writing this to create awareness to those people who haven’t experienced infertility, who typically say things like this (many times with good intentions) to others going through infertility.

Here are 20 things NOT to ask/say people going through infertility:

  1. When are you going to have a baby? You are running out of time.
  2. Just relax, it will happen
  3. Drink a glass of Wine, it will happen
  4. Go on vacation, it will happen
  5. Stop trying, it will happen
  6. Lose weight
  7. You are young, you have plenty of time
  8. Do this, try this, it worked for, it will happen (Varies all the way from eating McDonald’s fries to using essential oils)
  9. For people with secondary infertility or have experienced losses before- You at least know you can get pregnant
  10. I know a bunch of ladies who’ve had babies in their 40’s! Don’t worry, it will happen
  11. To people with secondary infertility- At least you’ve got one, you’re so lucky, you might just have to be happy with one
  12. You are lucky you don’t have kids yet! (or) It’s so hard having so many kids
  13. You can have one of mine
  14. My husband looks at me and I get pregnant (or) I sneeze near my husband and I get pregnant
  15. Comments by a younger couple – We tried for a really long time( 2-3 months) to get pregnant, I understand your frustration
  16. Don’t worry, the technology is so good these days!
  17. Have you thought about adopting? it will kick-start your hormones and you’ll get pregnant. It happened to my (insert random relative)
  18. If God thought you were ready, you’d be pregnant.
  19. Maybe it’s just not meant to be (or) whatever is going to happen will happen.
  20. It’s not just the words, it’s the body language too- When people ask if I have children and I say, I do not, their reply almost always is, you never wanted kids?! With a surprised look on their face.

Even today at my nail salon, my manicurist asked me, how many kids, I said one(adopted). How old, 5 years. The next question immediately, you don’t want to have more???? You should have more..

This article is not intended to judge or blame those folks who say these comments. Many of you say these things out of good heart and well intentions. You all want to support and care for your loved one dearly.

Just keep in mind, these words can and will create a deeper wound to people going through fertility struggles. Because many of us are desperately seeking and doing whatever it takes to get and stay pregnant and yet it’s just not happening.

Unless you have experienced infertility, it’s hard to understand and relate to the pains and struggles all around. Infertility affects ones overall being- physically, mentally, emotionally and spiritually.

Here is one suggestion I will offer to people who are supporting a friend or a loved one.

Tell them, I may not truly understand what you are going through, but remember, I am here for you. And give them a big hug. Sometimes that’s all we need to feel better even a teeny tiny bit!

“Sometimes, what a person needs is not a brilliant mind that speaks, but a patient heart that listens.” Anonymous

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Fertility Treatment Survival Skills

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Fertility Treatment Survival Skills

Practical and Emotional Top Tips from Iris Fertility Sherpa Natasha Canfer, Clients and Colleagues.

As the founder of Iris Fertility – an organisation offering bespoke practical and emotional support and companionship to individuals before, during and after fertility treatment – I am regularly asked what people can do to help manage the challenges that fertility treatment throws at them. Together with Iris Fertility clients and colleagues, I’ve put together our top tips, insights and nuggets of information.

  1. Put Yourself First Throughout the Process

Go gently, treat yourself kindly and say ‘no’ to people who are going to sap your emotional energy especially when treatment’s underway or you’re in the 2 Week Wait (2WW) – finding interest in or compassion for anyone else while you’re in the throes of fertility treatment can be challenging. Put activities on hold that you’re not interested in or can’t face. If you feel like you ‘should’ be doing something with someone then probably best to avoid! Be aware that how you feel day to day (and even within the day) is likely to change.

Don’t put off taking that first step – that might be going to your GP or going directly to a clinic for a Fertility MOT.

Don’t do too much of your own research – it can be mind boggling, confusing and cause anxiety.

Seeking the support of an individual or organisation (like Iris Fertility) who knows the process really helped us with having a sounding board away from the clinic environment. We could ask the questions we didn’t necessarily want to ask our clinic and raise concerns we weren’t able to share with friends and family. Don’t leave a niggle or a doubt unsaid.’ Loretta, Somerset

2. Trust Your Gut Feeling

Follow your instincts. Those instincts or your gut feeling might not appear to be logical but if something doesn’t feel right then it probably isn’t for you – even if you can’t pinpoint the reason.

3. Inform Yourself

Depending on your circumstances, appointments at fertility clinics can feel overwhelming. You might be presented with a lot of information and it can be difficult to take in exactly what’s being said and what that means for you – particularly if you’ve just received tests results that aren’t as you’d hoped. Also, a clinic may only give you information that’s specific to the services it offers rather than providing you with an overview of what might be available to you nationally and globally.

‘Don’t be afraid to ask questions – the doctors aren’t gods and they need to be challenged sometimes so that you know they’re doing the best for you as an individual.

Talk to people who have also been through this and don’t bottle things up especially through the 2 Week Wait.

Don’t be scared by the process. Embrace it but be careful as it can become addictive – trust your instincts when it comes to knowing whether you’re ready to say “enough is enough”.’ George, Ireland

Other sources to look into if you feel able are:

Progress Educational Trust (PET) – a UK-based charity which advances public understanding of science, law and ethics in the fields of human genetics, assisted reproduction, embryology and stem cell research: Progress Educational Trust

Human Fertilisation and Embryology Authority – the UK’s independent regulator of fertility treatment and research using human embryos. An expert organisation in the fertility sector and the first statutory body of its type in the world: www.hfea.gov.uk

‘Question, question, question your clinic about all the costs involved and its refund policy.

Ask your clinic about risks of failed fertilisation and unsuccessful thawing of frozen eggs and embryos.

If you opt to use a clinic abroad, check whether you can use a clinic of your choice in the UK alongside that overseas clinic or are you tied to one of their associated clinics?

If you go abroad, factor in how easy it is to arrange scans, blood tests, medication, intralipids, etc. Also work out whether you will easily be able to get flights and accommodation at short notice.

Is the clinic open at weekends and able to work around you?’ Sarah, West Yorkshire

4. Remind Yourself that it’s OK to be in a Different Emotional Place from Your Partner

Depending on your circumstances, it’s possible that you and your partner may want to choose different treatment options or you may find yourselves in a different emotional place from one another. That’s OK and totally understandable. Open and honest ongoing respectful communication with each other is important – and can also be exceptionally tricky especially when emotions and hormones are running high. If you feel that counselling would be beneficial then speak with your clinic about what they can offer you and when. Otherwise, you could locate a specialist infertility counsellor through BICA

Take the time you need.

Talk to your friends. If they are real friends they will want to lend an ear.

It’s OK to recalibrate your understanding of who you are if that’s necessary.’ James, Hertfordshire

5. It’s All About You: ‘Fertility Treatment’ is an Umbrella Term

Ensure that your clinic tailors all your treatment and medication to you and your needs.

6. Who’s Who? Clinic Staff

Make a friend among the clinic staff and ask them for their work contact details. It’s beneficial to have an ally or two on the ‘inside’.

If there’s a staff member who you have strong negative feelings towards for whatever reason and you would prefer them not to be involved in your care then let your clinic know. Most clinic staff work as part of a team and will try and accommodate patient requests of this nature.

I would’ve liked to have treated myself almost as if I was recovering from an illness – very gently. So do what makes you happy or at least calm. Go to places that make your heart sing and your fear retreat. See only those people who make you feel positive and with whom you can be completely yourself.’ Caitlin Allen Acupuncture, West Yorkshire

7. Statistics and Other Numbers are Only Part of the Picture

Perhaps easier said than done but try not to get too hung up on statistics and numbers. No one can say for definite how things are going to work out for you. Ultimately you need one egg, one sperm and one womb to get along with each other. If you’re comparing clinics then make sure you’re comparing like for like statistics. The figure you’ll probably be most interested in is the live birth rate for the female age group relevant to your situation.

8. Check Out Donor Conception Network

If you’re considering using donated eggs, sperm or embryos then check out Donor Conception Network (DCN) as soon as you can but preferably before you even start any treatment or become pregnant. Donor Conception Network is a charity and supportive network of more than 2,000 mainly UK-based families with children conceived with donated sperm, eggs or embryos; those considering or undergoing donor conception procedures; and donor conceived people. Staff, volunteers and network members have a wealth of knowledge, information and expertise about all things past and present in the world of donation including the possible impact of telling or not telling donor-conceived children about their genetic heritage: www.dcnetwork.org

‘If you wish to find the best possible fit with a surrogate mum, then Surrogacy UK is a great association to join. With their ‘friendship first’ ethos, get togethers are organised so that friendships can be formed before Teams are created.

Speaking as a two-time surrogate mother, I felt that finding the couple to team-up with was all about friendship chemistry. Being open, honest and approachable is a good way to connect with a potential surrogate. It may feel scary at first and you may feel exposed and vulnerable, but it works both ways. Imagine a year down the line when your surrogate/friend is about to birth your baby, she will be trusting you to hold that space for her, as the baby is delivered at long last in your arms.’ Jay Kelly, Surrogate, Baby Alchemy

9. Going Abroad – Is the Grass as Green as You Think?

If you’re thinking about going abroad for treatment, investigate what the implications of doing so could be for you and any future children. Here are just a handful of things to consider:

  • If your UK clinic is encouraging you to go to a particular overseas clinic then is it affiliated in some way to that clinic? If so, how and what does that mean for you and those clinics?
  • How is the overseas clinic regulated?
  • What’s the legal situation regarding types of fertility treatment in the country (or state) of your choosing?
  • Which screening tests are performed on patients and partners?
  • How much is it going to cost you financially, physically and emotionally especially by the time you’ve factored in flights and accommodation?
  • If you’re using a donor abroad then how are they screened and selected?
  • What are the anonymity rules in relation to donors and how would this impact on any child(ren) born from treatment?
  • How many families can a donor donate to and what could this mean in terms of the number of half siblings for your potential child?

10. DIY Donor Sperm – Future Proof Yourself

If you’re using donor sperm outside of a clinic environment then before you even start preparing for pregnancy ensure that your personal safety is paramount. Also, get legal advice regarding your specific situation and make sure you have legal agreements in place in relation to your particular circumstances.

11. Remember the Adult Child

While your focus may initially be on you becoming pregnant, your goal is to have a baby. That baby will hopefully grow to become an adult so when making decisions around the types of treatment you are willing to undertake, consider how your future (adult) child at different life stages could feel about any decisions you make and the impact of your choices on them.

12. Include Your Partner

It might feel that the spotlight is on the individual physically undergoing the fertility treatment so actively include (and encourage your clinic to include) your partner if you have one.

13. Changing Times

The nature of fertility treatment changes all the time so if it’s been taking you a while to get that baby into your arms you might begin to wonder if a particular treatment had been available to you earlier then whether life would have worked out differently. Be kind to yourself and remember that on your quest to become a parent you can only make your best decision with all the information you have available to you at the time the decision needs to be made.

14. Escape!

Develop a new hobby or skill in which you can immerse yourself and that can be done at any time regardless of the stage of treatment you’re at. Current favourites to distract clients are escape rooms, singing and learning a new language.

15. Funding

If you’re eligible to receive NHS funding but you’re not sure you want to have treatment in your allocated NHS fertility clinic then you could investigate the possibility of transferring your funding for use in a private fertility clinic.
If you’re not eligible to receive NHS funding or it’s not available in your area then speak to your clinic about any payment plans it might offer. You could also look into specialist fertility funding organisations which provide IVF refund schemes and multi-cycle programmes.

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