In this webinar, Karenna Wood, Award-Wining International Fertility Coach and founder of Your Fertility Hub, has discussed support groups, where to look for them, how to join and how they can help you when you’re going through your fertility journey.
Karenna Wood is an International Fertility Coach and the founder of yourfertilityhub.com. Karenna considers herself a very passionate advocate for women and couples getting more emotional support during infertility. She also truly believes this area isn’t talked about enough and that there isn’t enough out there. Karenna has been a fertility coach for a decade, coaching one-on-one with women and through her app ‘Your Fertility Toolbox’.
When you’re thinking about joining a support group, according to Karenna, everyone has this stereotypical imagine in their mind of almost like one of those alcoholics anonymous type meetings where everyone’s in a room, sitting around in a circle, shuffling in their seats, embarrassed, not making eye contact, standing up and doing an icebreaker type of exercise, like saying your name, telling your story and your challenges at the moment. A lot of people feel uncomfortable and embarrassed and just don’t feel that sort of thing is going to help them, especially as they go through infertility and hearing other experiences. There are lots of different types of support groups, and that’s why you can find the one that works for you.
Karenna mentions that joining a support group can be incredibly beneficial for you.
Going through infertility and, particularly, going through treatment as well, like IVF and IUI, is very stressful. It impacts on all areas of your life, such as:
You might be doing all the list of things that you feel you need to do in terms of acupuncture or supplements and doing all those lifestyle extra things as well as alternative therapies. Thus, you may be feeling quite up and down, like a roller coaster of infertility, and it can be very unstable through your cycle, what people can say to you, the insensitive comments, things that you might read or see on social media, and all of these things around you, it’s just a huge area and level of impact it can have on you.
One study compared the levels of stress and depression within the infertility community to the same as those with a terminal illness.
Now, just take that in for a moment. That is crazy, it is. There isn’t the support out there, really, for this because it is so serious, the impact it can have on you, but what I want you to know is there are some positive things that you can do to help improve your experience of infertility, genuinely improve it. – says Karenna
One way of improving your experience of infertility is to reach out for support and to join a group. Some studies have shown that when people are part of some community, they feel they belong to a community or a group and that in itself can have a huge impact on how they feel because infertility can be incredibly isolating and alienating, even with people who do understand what you’re going through.
There’s a wonderful TTC community out there, and there’s a real variety of experiences, but apart from that, your family and friends may not just understand what you’re going through and will not understand the deep impact it will be having on you. Therefore, seeking out your tribe, seeking out your support group, and having and seeking out that feeling of belonging can be so beneficial to you because it will give you somewhere where you can go, where you can vent, where you can seek support, where you can just get that ‘me too’ understanding, someone who gets it. That’s why choosing the right support group for you and the right avenues to seek that support is important, that it is the right kind of support. A support group can be incredibly beneficial.
Karenna states she likes to address both negative and positive things about support groups that help you make decisions because decision-making in itself is a huge part of infertility. There are a lot of things that you need to make decisions on, from very minor things up to the really big things.
When it comes to choosing your support group, things around you or what you might experience in support groups might have some potential negatives, and it’s important to address those up front.
Karenna used to run a face-to-face support group for infertility in Perth, and she noticed that a lot of people would sign up, go, and then drift away as they got to the actual event. After getting in touch with some of them on a one-to-one basis, they were saying they were scared to go and that they didn’t know what it was going to be like. Therefore, there can be fear, particularly attending a face-to-face event, but overcoming that fear and sometimes really working to push through that comfort zone can be very well worth it.
There is a lot of information. If it’s more of an information-based group, some of that can feel a bit overwhelming, or sometimes even just the stories in the room can feel overwhelming to you as well. According to Karenna, you can sometimes take on board some other people’s stories.
Now that’s one thing I’d love you to do, it’s to be aware when you’re doing that. It’s important, and it’s wonderful to listen to other people’s stories, but they’re not your story, so it doesn’t necessarily mean just because the lady sitting opposite you is on round 8 of IVF that you will have to go through 7 rounds of IVF to get to where she is, it doesn’t necessarily mean that you will have the same experience as someone going through it. – states Karenna.
It’s very important to listen to the stories but create a bit of a boundary within yourself and understand that’s their story, and you know yours. You must be, almost a bit, assertive with yourself in terms of what stories you’re letting in because that can be important as well. In terms of other negative outcomes, there aren’t many, there’s a lot of positivity that you can get from joining a support group.
One of them already mentioned by Karenna is the feeling of belonging, that feeling of joining a group and being part of something; there’s nothing like it. When you’ve been feeling very alone and isolated, to reach out, go through that comfort zone, and be rewarded with such warmth, positivity and encouragement, and that feeling when you’re not alone anymore, that in itself can be such a huge benefit of joining a support community or group.
There can be lots of other benefits in terms of finding out some great information, meeting friends that you can take outside the group, or even long-term friends. Many people’ve met people in a time of crisis and then kept on being life-long friends.
Joining a support group can also have a positive impact on the rest of your life because when you’re feeling more positive, that then impacts everything in your life. So, it can impact your relationships particularly, for example, your partner might really notice, after a support group, you go home much more bubbly, more excited talking to him. It can really have a positive impact on your mindset, which then impacts relationships.
A support group can also help you to feel that you’ve got some structure. You’ve got your structure either through IVF or natural cycle, but having a structured, arranged support group at a set time and date can also help bring some structure, and you can be looking forward to that event. This also can be used as a part of your calendar of positive things to help you keep going and motivated because, funnily enough, motivation is often something people go to Karenna for help during the coaching.
Another positive outcome is that having people around you to support you can help you keep motivated and keep you going at a time when you might feel too low to be able to do that just by yourself. There are a lot of positive benefits of going to a support group, either in person or virtual. It’s important to push through that fear in the initial part of stepping out of your comfort zone to go into the group.
There are a lot of different types of support groups out there in lots of different avenues. Karenna will talk about some of them to give a few ideas.
There’s a bit of a distinction between in-person support groups, which are location-based, and virtual support groups that could be anywhere.
There are a lot of different virtual support groups and you have to look where you might find one of these. For example, some of the Facebook groups run events, support groups, etc. This might be somewhere you could look.
Clinics may run a support group either in person, virtual, Facebook group, or something that’s very specific to your clinic, that sort of feeling of belonging to the same clinic and that really helps you bring you together. Also, being in the same location can also help with any questions or recommendations that you may have.
This is relatively new and popular. There are several fertility rooms there that you could join and listen to.
There are bigger organizations as well that you can look at within your country which offers support groups. For example, Resolve is a wonderful organization in the US, an infertility charity, that runs lots of online events as well as in-person events, and they have ambassadors all over the country working to support women.
For example, Moms in the Making in the US is a Christian faith-based support organization.
In conclusion, there are many different ways to join a support group, and you may also want to find really specific support. For instance, if you have a diagnosis of endometriosis, PCOS, or male factor infertility, you may want to look for a specific support group around those if you’re after more information and specific support on those exact diagnoses.
Those are some of the support groups but there are so many and the most important thing, according to Karenna, is trusting your intuiting when you’re looking around and searching online, trusting that journey, and also knowing that if something isn’t right for you, it’s totally fine to pause it or to walk away from it and say that it’s not for you.
The amazing thing is that you went and you tried, so just give them a try, and if it’s not right for you, you can walk away, but you never know, this could be a real game changer for you in terms of how you experience infertility. – expresses Karenna.
This sounds a little bit funny, but you may want to bring along a notepad and pen. You may want to block out the time beforehand, but particularly, afterwards in your calendar because it may be upsetting for you or something that you need to emotionally come down from.
For example, Karenna often runs her support groups in the evening, and she does meditation at the end. Moreover, she often says to people that this is their wind-down time, so just be aware of making the right time for you. It’s not something that you necessarily want to rush into and rush back from, so have a look around the times of the events and groups that you can get involved in that might really suit you and your schedule.
One of the final messages that Karenna considers important is to go out and to connect like you’ve come onto this webinar for a reason tonight because you are seeking out something more, you are seeking out more support, you are feeling that you need more in your life, and when you choose to connect and believe that support is out there, it can be a catalyst for so much change.
Karenna has seen some huge shifts in women when they do make those moves and commit to living through this in a better way. Therefore, when they choose and when you choose to connect and make that brave step of introducing yourself, telling your story, and saying this is what your challenge is, this is what anyone else has gone through, someone that got any support that they can offer, or even just sharing your story for people to just say ‘gosh, I’m sorry, that’s tough”. Sometimes, people say that is just what you want to hear, so when you choose to connect, you really can reap so many benefits from the support group.
As an example, Karenna talks about the support group and the app she runs. Her app is called ‘Your Fertility Toolbox’, a web-based app.
Through this app, they run a monthly virtual group. When people log on via Zoom and chat, people gain experience. Some of the feedback Karenna had from that is how humbling it is to meet other people and know their stories, how much it helps to take you out of your own perspective because you can often be very consumed with your infertility journey, and even just hearing other people talk about theirs can open your mind up and open your perspectives. Karenna had some great feedback from her support group.
Moreover, the focus of the toolbox is on providing relaxation, mindset, and wellness tools. Each group that you go to will have its focus, and it’s about finding the one that’s right for you, so Karenna does a short, guided meditation at the end of the support group to relax everyone and, sometimes, at the beginning to get everyone into the right space. This can help to know what’s going to work for you, meditation isn’t something you have to fear, it’s just being guided into a relaxed state. In addition, through Facebook groups, groups, and things like that, you can get the same feelings in the way of a support group, so you can be a member of so many groups, particularly on Facebook’s groups as well as Karenna’s through the toolbox app.
The reason the app was created and taken away from social media is because social media can sometimes be a real source of pain for you, so Karenna wanted to create something separate and away from social media, somewhere that was just positive and inspiring to talk around how you feel about infertility, not just all the information about it as a lot of the groups are quite information-based.
One thing I often say to my clients is we can’t control infertility, but we can control our own response to it, and we can control our own environment… I’d like to say that to you, that’s important. –
When Karenna talked to one of her clients who subscribed to everything she could subscribe, about endometriosis, she took on board a lot of the stories and experiences of other people. She was almost building up a bit of a fear and stress state around endometriosis and the fact that it might mean she may never conceive. Therefore, Karenna said the following:
How about you, just for now, pause the communication that’s coming into you around your endo, just to give you a break and also give you a chance to set your own story and to set your beliefs around what your endometriosis means to you, and what it means in terms of your certainty that you will conceive in the future.
It’s important that you almost curate that environment around you, so if you are finding some of the groups or social media feeds quite stressful, or that sometimes things pop up like pregnancy announcements and things that can be very painful and often cause you to spiral negatively, it’s okay to pause, to say no to people that bring you down or to say no to people that suck your energy. During this, you have to look after yourself, you’re going through something tough, thus you need to create that right environment, and sometimes that does include changing the settings on your social media because a lot of the feedback Karenna received within the toolbox, for example, is that a lot of members have come over to the toolbox and paused that daily going into social media feeds and that it’s been very helpful for their mindset to do that.
This is an example of another way that you can use groups in the right way to support you as you’re going through this. Furthermore, within the app, there’s also a private connection with members, so you can message members back and forth in a secure environment. You can also message coaches, Karenna herself, and check other wellness coaches within the app. In addition, they also do a spotlight member each month, so Karenna does a fertility coaching call with a member, and they share that with all the members. This just gives you a window because sometimes people’s stories, which you can get through these groups or the spotlight member, can be so important to your mindset, to hear someone else’s story and hear the real inner workings of it as they do in their spotlight member calls, like how did you feel when this happened or how did you cope with the miscarriage. These are the kinds of questions Karenna asks.
If you actually get on the inside of those stories, it can be really helpful for you and really comforting.
It’s called ‘Your Fertility Toolbox’ because over the years, as a coach, Karenna developed a lot of tools to help her clients, such as:
There are over 100 tools in the app plus wellness. There’s a real confusing environment around diet, movement, and all the lifestyle elements; therefore, Karenna brought all that together into the toolbox. In the app, there’s a nutrition coach as well as a yoga coach, and all these really lovely things that bring it into one place for a member. So, if you are seeking more tools, your fertility toolbox app is built to help deliver those for you and you can access them at any time 24/7 on your phone.
In Karenna’s words:
upport is wonderful when you’re reaching out to others, but I think it’s really important that you know that there are so many things that you can do, that you can take control of your mindset with, as well, at home on your own, even just listening to a meditation.
For this reason, you can just google fertility meditations or have a look at some of Karenna’s on YouTube. It gives you an idea of how you can relax your body, relax your mind, calm your mind, and just find the right tools for you. According to Karenna, you think of tools as a buffet, where you just choose and try a few things, but you kind of end up sticking to the things that you really like, so go out there and find the things that work for you to help you relax, to relieve your stress, to help you be more positive, such as finding some quotes and pinning those on Pinterest. Whatever it is, anything that you can do to help your mindset as well as getting that group support can be so beneficial and life-changing, even whilst going through infertility.
You can improve the experience of infertility right now, even whilst you are still not pregnant, even when you are going through the stresses and strains of IVF. You can experience it in a better way when you work on this area and commit to yourself because you are at the centre of your fertility journey, so it’s really important to remember that and to put yourself at the heart of it by looking after your mindset, reaching out for the support that you need and doing the best you can to help yourself as the focus and not just sort of be taken away on the rollercoaster ride that is infertility and IVF.
I have to be honest, this is not the usual. It’s not usual for the support groups to be both. There are a very limited number of support groups and support events for men going through infertility, unfortunately. I wish there was more, our focus is women at yourfertilityhub, and it is an area that we’re looking into how we can support men more. It’s very rare to find one altogether, men and women. Some of the areas that you may find are more around the ‘going through’ relationship therapist, anyone in your area that maybe specializes in infertility.
Some of them may bring together the women and men in their groups, and, just so you know, Harvard has been running a study through Boston IVF, and it’s been one of the most long-running fertility studies into emotional support, and they run a 10-week program. I think it’s several weeks through that they bring the male partners in on that, and it’s been very, very successful that they do that. So, I’m hoping that it’s something that will increase over time, that it will sort of bring your partner along. I also think don’t be frightened to speak up and say that, if you do join a support group, to say to the organizers if it would be possible to bring your partner event, even as just a one-off to start because I think it’s an area that has a huge amount of benefits and an area we need to work more on and change.
Very specifically on donation treatment, it’s an area that online you may be able to find some groups specific for men because this is an area where it becomes mandatory. Here in Australia, it is mandatory to have counselling if you are going for donation, either egg or sperm donation treatment, so I’m not sure where you are in the world, but you can seek out whether there is support through your clinic. In terms of actual support groups, I think your best bet is online for donation treatment support groups and donation treatment organizations.
I think there will be some that will run specific male groups, but I think the other thing to address with your question is, and this is so often the case especially when you’re going for donation treatment and trying to make those decisions, is that you are not often on the same page at the same time as your partner. It can take a bit longer for one partner to arrive at that decision, and I think the advice is to not force and push that process as hard as that can be, I know it’s always about time scales and moving forward, but you can’t always rush that emotional journey to non-genetic parenthood. You have to sort of process some of those things, so it may also be that you could seek some information from your clinic or from a donation agency around working through that process deciding on it, or some organizations sort of promote stories of people who’ve gone through donation treatment because I think what I’ve often found is that the issues around non-genetic parenthood and making those decisions, once you’ve actually gone down the line and have your dream family through donation treatment, a lot of those initial fears and concerns are not even there.
They’re not even on the table anymore, but when you are in them and making those decisions, they do feel very important and very serious to discuss, so it’s important that we don’t rush that process and that you almost have to wait for your partner to arrive at that place with you. As you say, seeking out information, other stories, and potentially a support group can help him along that line, along those decisions, and with that decision, he may be able to access through your clinic, one-to-one support with the counsellor there, or you may be able to look at a specific fertility coach or counsellor in your area or online that could specialize and help work with him. There’s a guy, I will find the name, and you can always email me for it, called Russell. I can’t remember his surname, he is in the UK and talks a lot about that male experience of going through infertility and has got some specific materials for that, so that might be another area that you could look at, although I don’t think it’s specific to donation treatment.
Yes, there is a lot of variety of groups out there, and some are run by the doctors at the clinics. The majority are run, normally, by the psychologist or the counselling staff at the clinics. You can seek out some of those. It’s like I said around the type of group and trying to choose the one that’s right for you, it depends if you are trying to seek support from a more medical side of things then you would look for a doctor-based support group, but I think, generally, the remit of support groups is around that more emotional and that impact of infertility. So, looking for a group that’s run by a psychologist a counsellor, or a coach would be probably the best place for you.
Now, there’s a difference I often have to explain between coaching and counselling. I am a coach, and I am trained as a counsellor as well, but I am a coach because what I do is coach people forward, so a lot of coaching is facing forward, whereas a lot of counselling can be facing backwards, not always, but it can be facing backwards. It’s also thinking about which approach, in terms of those is right for you, is there things that you need to address, past decisions, past regrets, past traumas, for example, and counselling and a counselling-based approach can be helpful for you. My approach is to be very forward-focused, to be very solution-focused as well, which is a very coaching type of approach. You must find the right remit of the group, and who it’s run by will give you a really good indication of the remit of the group.
I’ve got a whole shelf here. You can probably see books on fertility counselling and coaching, and particularly on support groups I would probably reference the work of Dr Ali Domar from Boston, from Harvard as the leading expert in mind and body, fertility groups, and supporting women. She’s probably the most evidence-based and the most scientifically studied information, so I would look up her work. She’s got a wonderful book for anyone to read called ‘Conquering Infertility’, it’s a truly wonderful book.
I would recommend that one, but in terms of the studies, her work over the last 30 years has consistently shown huge impacts, and huge benefits in terms of the rise of moving people from feeling depressed, feeling stressed, feeling anxious, really moving people from those states through working through support groups and giving people these practical tools to help with their mindset, their relationships, and their lifestyles. So, I would check out that as some leading work, but happy if you want to email me, my details are on the website, you can contact me there, and I can give you a bit of a rundown of some other books and information on this theme as well.
