The importance of Infertility support groups

Study group
80 0

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

 

 

 

In this article