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The importance of Infertility support groups

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Research has shown that women struggling with infertility experience the same level of depression as women with Cancer, HIV and heart disease, and a shocking 42% of respondents in a recent Fertility Network survey reported having felt suicidal at some point.

That meant approx. 330 respondents felt suicidal at some point, and if you apply that percentage to the number of people going through IVF in a year that would mean there are potentially 21,000 women feeling suicidal due to infertility every year. And that number doesn’t include those that are not currently having treatment.

You grow up believing that it is easy to get pregnant and that as soon as you want a baby it will happen. For most people this is the case, so they can’t possibly understand the desperation and longing that those struggling to conceive are feeling.

Because of this lack of understanding, they just aren’t able to fully support someone with infertility. They try to help and offer comfort with comments like ‘don’t worry, it will happen’ and ‘stop thinking about it’, but to someone struggling month after month to get pregnant these words offer little comfort and almost trivialise the heartache they are feeling.

There is a huge lack of awareness and understanding of the emotional impact by anyone who hasn’t been through it, and the only people who can truly empathise are those who have experienced the struggle themselves.

Many people suffer alone, not wanting to tell family or friends for any number of reasons (embarrassment, privacy, other’s lack of understanding), which makes the journey a very lonely one. Sufferers question their mental stability because of the thoughts and feelings they experience. They long for someone other than their partner to talk to, someone that completely understands, someone they can confide in.

This is where support groups come in…

Support groups can be invaluable when going through fertility treatment. Treatment is extremely intense, you are pumped full of hormones and the entire cycle can be weeks of intense worry and anxiety. You put all your hopes on treatment working and then analyse every symptom to prove success or failure of treatment. Knowing other people that have experienced the rollercoaster of treatment (or are going through it as you are) can make the process less scary and gives you someone to talk to.

The Fertility Network survey showed that 28% of respondents sought support from Fertility Network UK and 45% from another organisation or online support (Facebook groups, Twitter, and fertility blogs).

Only 17% actually attended a support group but 52% would have liked to attend had there been one nearby.

There is clearly a demand for more support, but unfortunately this support is very limited in certain areas. There is a real need for an increased awareness of how infertility affects sufferers emotionally and mentally, so more support can be offered to them – by clinics, local charities, friends/family.

After struggling with infertility and going through IVF myself I set up a support group in my local area and the feedback I have received about how it is helping emotionally has been great. The group is full of amazing people who are supporting each other through the worst time in their lives, whilst struggling themselves, and they are forming strong friendships outside of the group.

 

How infertility support groups help

You can talk openly and honestly without fear of judgement

You know that you can be completely honest without the group thinking badly of you, they are very likely to be feeling the same. When you tell the group you are feeling upset because another friend has announced their pregnancy, they just get it and will have your back, without questioning your opinion. They won’t think you are a horrible person, they will probably have a similar story to share.

A support group may be the only place you can be truly honest about your thoughts and feelings. This gives you a great outlet for your fears and emotions, rather than keeping them all bubbling inside.

They can help validate your feelings

When you are questioning if you have something wrong with you mentally because of the thoughts you are having, it gives a lot of comfort to know that you are normal and that your thoughts are normal too.

I constantly questioned my ability at everything due to my inability to conceive, it ruled my life and I felt like I couldn’t do anything right or well, like I wasn’t good enough. I started to question how stable I was, and it wasn’t until I spoke to other women after my treatment that I realised that its normal. I wish I had know that as I was going through it, it would have been a huge relief to me.

They show you that you are not alone

With a support group beside you, you know you will never be alone, if you are having a bad day you can turn to them and they will be there for you with encouraging words and virtual hugs. When you are trying for a baby it seems like everyone is pregnant and that you are the only one that isn’t, or the only one having problems. It is comforting to know you are not alone in your struggle, and to spend some time in a safe space with no babies and surrounded by others who understand.

 

They can be a lighthearted break from the day to day reality of infertility

Many of the emotions felt while struggling with infertility are negative – anxiety, jealousy, grief, anger, hopelessness, sadness. Although the groups cover upsetting stories, there can often be a lighthearted side when sharing embarrassing stories about parts of trying to conceive and treatment. Everyone can relate to them and see a humorous side to them, which add a sense of solidarity over things like a shared loss of dignity

You may form friendships outside of the group

Going through this difficult journey together gives a shared understanding and a strong bond. I have seen quite a few friendships started in my group, which is great as they then have true friends who will be there for them. When friends have then gone on to have positive results from treatment together they are then supporting each other through pregnancy after IVF.

Support groups form a sense of community, and the level of support being shown in my local group is amazing and so heartwarming. Whether members have positive or negative news, people are there to support them, and are remembering to go back to ask how they are at a later date, which is so important.

It can make the clinic waiting room more welcoming

Going to a group/online group in your local area means you get to meet lots of other people in your area also going through treatment. Chances are you will be in the waiting room at the same time as someone else from the group, so you can support each other while you wait and it reduces the awkward silence of a waiting room full of people all staring at the floor while feeling the same emotions.

I’ve seen this happen with my group and the women feed back that it really helped seeing a friendly face while waiting for their appointments.

They are great for information sharing

Groups can be a great source of helpful information and coping strategies (tips for keeping calm, coping with the TWW, add on procedures available). My support group members have reported that they have learnt a lot of useful information at the group that has helped them feel more informed.

Groups may also invite guest speakers who give a direct source of helpful information. It gives them a safe space to ask experts questions that they may not otherwise get the chance to do.

It is important to note that members need to be careful not to give medical advice to other members, as only qualified medical professionals should be doing that.

Quote from a support group member

‘Finding the support group that Sarah Banks set up in West Yorkshire proved invaluable to me, in more ways then I ever imagined when I nervously walked into the support group for the first time, trying not to make eye contact as I had become accustomed to each time I walked into the fertility clinic waiting room.  

I chose not to tell many of my friends or family when we embarked on our second round of treatment as they had previously highlighted that they didn’t truly understand and would often unintentionally say things that hurt or belittled what we were going through. Being in a room with people who were going through the same rollercoaster and who truly understood was such a relief. It became the only place where I felt I could truly be myself and openly talk about some of the emotions that I found difficult to admit, even to myself, such as the uncontrollable jealousy and resentment when yet another friend announced their pregnancy. 

But the benefit that took me by surprise was the light-hearted side of the support groups. There was often humour that only others who have been through the undignified procedures could get away with. This took away some of the intensity of the treatment and there was many a time I would find myself smirking when someone’s funny comment sprung back to my memory whilst in an uncomfortable situation, usually whilst laying on the clinic chair, legs spread, bum hanging out. 

And it also broke the unbearable silence of the waiting room. Seeing a friendly face amongst the eyes down of the waiting room and having the supportive hug reminded me that I’m not alone and we are all so strong.’

The future of support groups

I believe there is an opportunity for groups to help members in more than just a supportive capacity, one that encourages more than just sharing experiences and asking questions. I would love for the groups to help members with their mindset, to improve the journey while they are on it, but also make changes that could increase their chances of getting pregnant.

There is the opportunity to:

  • Keep members feeling positive, with tips and ideas on how to do this.
  • Reduce stress and anxiety brought on through infertility.
  • Challenge the groups thinking to help them cope better going through treatment.
  • Encourage engagement with other group members, to support each other on the journey and keep each other going.

I have set up a free Facebook support group to start this – to help women reduce their anxiety during treatment and while struggling with infertility.

I hope that this increased level of support will help people make small changes to feel more positive, less anxious and take control of their fertility journey.

If you are struggling with infertility and don’t have anyone you can talk to about it that truly understands, then I would definitely look up whether there is a support group in your local area (the Fertility Network has a list by area on their site). There are also a number of online support groups for people struggling with infertility and going through IVF.

If you would like more support through your journey you can also join my free Facebook support group Surviving Infertility.

Good luck xx

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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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