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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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Mental Health

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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Mental Health

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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Mental Health

Iris Fertility: A Practical and Emotional Infertility Sherpa Service on your Path to Parenthood

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Emotional Fertility Sherpa

In 2014, after a soul destroying decade of trying – and mostly failing – to get pregnant with and without fertility treatment, Iris Fertility was born.

Through Iris Fertility, I provide independent practical and emotional support and companionship to individuals before, during and after fertility treatment – whatever its outcome. I work alongside people by carrying the emotional and practical load associated with fertility treatment: an Infertility Sherpa.

The idea for Iris Fertility grew inadvertently and organically from my husband’s and my own experiences of fertility investigations and treatment.

I vividly remember the day we received our initial results: a surprisingly dirty and ripped sofa in an unusually empty waiting room. Just one other couple looking sad, apprehensive and slightly numb. I’d somehow managed to convince myself that we weren’t going to be looking sad at all because everything was going to be OK. We’d only ended up here in the first place because I’d been over-exercising and had sent my body into shock. Being here was all just an aside. Plus, I had my ‘lucky’ scarf with me. It was all going to be just fine. So, when we were greeted by the Registrar who looked significantly less upbeat than the first time we’d met him, I had an inkling that life was about to change. What I hadn’t expected was to be asked to take a seat while we watched him divide an A4 sheet of paper in half and proceed to make what looked like two shopping lists. As it transpired, it was his ‘aide memoire’ for telling us all the ‘his and her’ reasons why we weren’t getting pregnant.

I was still determined that everything was going to be OK. That I was going to ‘do’ infertility differently. I wasn’t going to get caught up in it the way that others did. It wasn’t going to define me. And I was totally and utterly wrong. I couldn’t see out. It was all I could think about. I now know I would have done anything to have a baby. I also know now having bumped into the Registrar (turned Consultant) a few years later that he didn’t need that ‘aide memoire’ after all. He told me that day is going to stay with him for the rest of his career.

Life certainly did change for us that day. Significantly. And over several gruelling years and 11 rounds of fertility treatment we experienced: extensive male and female investigations and surgeries cycles of IVF + ICSI frozen embryo transfers stimulated and unstimulated IUIs treatment with and without the help of a known and unknown donor pregnancy losses the pregnancy and birth of our first son subsequent failed cycles of IVF + ICSI – this time with fertility treatment ‘add ons’ a pregnancy involving multiples with first trimester complications the arrival of boy/girl twins on the day of the Junior Doctors strike (and, perhaps unsurprisingly, after all of that) some complex emotional health issues.

The crashing waves of hope, loss and despair commonly associated with fertility investigations and assisted reproduction treatment became the dominant feature of my life. During the time we were locked into fertility treatment I felt sucked in, spun round and spat out. I was lonely, vulnerable and isolated. Friends were either pregnant or announcing the arrival of their first, second and third child. Things got so bad that even the new friends we’d met through fertility groups and forums were onto their first and second children through IVF. In fact, it seemed like the whole world was getting pregnant with and without help. It felt like everyone I knew was embroiled in their new lives with little ones. People disappeared. Caught up in their worlds of nappies and late nights. A world I didn’t understand. A world I felt completely separated from and desperately wanted for myself.

Looking back, I think it’s fair to say that infertility totally took over my life. And that hideous land of limbo felt never ending. I became an expert in my own body and amassed a wealth of fertility-related friends, professionals, resources and information. I also found myself being the ‘go to’ person for others who needed support.

It became apparent to me very quickly that whether we were using an NHS or private clinic the information we received at our appointments often didn’t give us the full picture in terms of what treatments, services and medications were available to us for the issues affecting us. Quite often we were given information that was specific to the particular clinic rather than what was available throughout the country (or, indeed, abroad). I also remember one clinic recommending we sought out the treatment and services of a particular overseas clinic (with which it had a strong connection) when, in fact, I discovered the same treatment and services were actually available in a clinic in a neighbouring city not far from our home. The implications of using an overseas clinic and its services were not explained. I felt trapped in a system and I felt trapped in a hugely commercial and competitive industry which appeared to me to be lacking transparency and independence. I didn’t know where to turn. I didn’t know who I could really trust. All I wanted was to be fully informed of all the options and if I wasn’t being fully informed to at least be told that was the case rather than being presented with information as if it were complete.

I also often wished that someone could do it all for me. Not the treatment itself as such but all the peripheral ‘other stuff’. All the many seemingly ‘little’ yet time-consuming tasks that ate into every area of my life and all those precious moments when I could have been doing something nice for me but instead was glued to my iPad or had my head in a specialist book or was on the phone to a clinic trying to find answers and to sort out logistics for the next appointments and procedures.

And then there were all those other times when there was nothing left to do other than to sit down and cry. And scream. And shout. Or even celebrate. Those were the times when I needed someone who just ‘got it’. Someone who had experienced fertility treatment but who was no longer caught up in it. Someone who didn’t need me to explain. There are some amazing fertility counsellors out there to whom Iris Fertility regularly signposts clients but I also wanted someone to be there for me outside of the dedicated counselling appointment times. Someone to be there for the updates. For those ‘Argh. Can you believe they said that to me or x has happened?’ Or ‘Great news. Eggs have fertilised. Phew. One hurdle out of the way’ Or ‘I’m not sure I can do this anymore.’ A befriending service as it were.

I wanted someone to help me with the practicalities and someone to soften my pain. But that person was not there. Although I’d initially found fertility groups and forums friendly, welcoming, informative and supportive (tinged with a little bit of competition and jealousy), they were transient as people’s situations changed. I always felt like I was the one waving goodbye as they ventured into the online gateway of the next forum group.

And that, really, is how Iris Fertility was born. By identifying something that I desperately needed and wanted but couldn’t find in one person.

So, when I’d come up for air long enough to take some breaths and talk to many other men and women, I discovered that I wasn’t alone and that’s what they wanted too: one to one practical and emotional support tailored specifically to their needs. Someone to take the load before, during and after treatment, whatever its outcome; an Infertility Sherpa.

Sherpa, advocate, mentor, supporter, coach, personal assistant, buddy, champion, cheerleader, voice, shoulder to cry on, listening ear, companion, guide, researcher, ally, confidant, PA, righthand person, mouthpiece, pathfinder…

Every person I work with calls me something different mainly because I can be whatever that person needs or wants me to be when they need me.

Here’s a snippet of some of the ways I offer practical and emotional support…

Practical Support

  • Helping you choose a clinic based on your specific circumstances
  • Liaising with clinics on your behalf – phone calls, emails, letters, in person
  • Identifying and arranging appointments with complementary health practitioners and other healthcare professionals
  • Signposting you to other organisations and professionals
  • Accompanying you to consultations and appointments
  • Research
  • Travelling for treatment abroad with you
  • Communicating with your employer
  • Raising complaints and concerns (I’ll leave the compliments to you!)
  • Facilitating animal-care, childcare and other logistical matters like hotel and travel bookings
  • Doing your shopping for you
  • Driving you to and from egg collection and other medical procedures or investigations
  • Shopping for cards and gifts to mark other people’s baby-related ‘occasions’
  • Talking to your friends and family on your behalf
  • Giving you access to resources such as books through the Iris Fertility Library.

Emotional Support

Daytime, evening and weekend in-person support when and where you actually need it – at home, in a café, at the clinic, walking the dog, in the car, at the beach, etc.

Online, telephone and text contact whenever you want and need it.

I used to think to myself if someone could just tell me what the outcome was going to be – children or no children – then it would all be OK. If I knew the end result was definitely children then I would keep on going but if it definitely wasn’t going to be then I would stop. I found the constant living in limbo and uncertainty while everyone else appeared to move on with their lives so hard. The inability to plan for the future, having to change things or cancel at the last minute was infuriating.

While I can’t tell you how long or bumpy your path to parenthood is going to be, I can be there with you. I will walk alongside you every step of the way carrying whatever it is you need to be carried to lighten your practical and emotional load.

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