Coping with the sadness and isolation that comes with IVF

[SELE97]

Hi everyone,

My partner and I are due to start IVF soon, we are both 24 and do not have any fertility issues but have chosen the IVF route to avoid passing on a genetic condition that I have (Mitochondrial Disease). Although we could conceive naturally there is a 100% chance that my condition will be passed on to our child and we are fortunate enough to qualify for a specific IVF technique called mitochondrial donation. This technique has also been referred to as 'three parent IVF', which means that if successful our baby will have mine and my partners genetic dna with the healthy mitochondria of a donor and therefore a very little chance of having mitochondrial disease. The only clinic with a licence to do this procedure in the UK is in Newcastle and as we live in South Wales we have to do a fair bit of travelling for each appointment.

Although we have always known we would go down the IVF route and knew it would be tough, I'm finding it harder than I ever expected. I've been trying everything to distract myself but I just cannot stop feeling sad and empty all of the time. Since our first consultation a month ago I have cried multiple times a day every single day. Everything is a trigger for me, I've had to come off social media because of pregnancy announcements, anything child related makes me cry and to make things even harder 2 of my partners close family members are pregnant. I try to be happy for them and I am, but I can't help feeling distraught after every time I see them and when I leave their house I burst into tears and am upset for the rest of the night because I want a child so so much it hurts.

I don't know how I'm going to get through this as we haven't even started treatment yet, we've got a long journey ahead of us and I'm struggling to cope already. Some family members know what we are going through but we didn't want to share the news with everyone until we were pregnant. Because this process is so different to conventional IVF I'm struggling to relate to anyone and feel like I have no right to be sad because we are young and fertile, but at the same time we aren't allowed to reach out to anyone else having mitochondrial donation because it is still an NHS research project and everything is confidential. It feels very isolating.

I feel like nothing anyone says can make this pain go away and no one I know understands our situation. I just wanted to reach out on here to ask if anyone else has felt this way on your IVF/infertility journey and what helped you improve your mood?

I'm sorry you are going through that. It sounds like you are grieving. When we need fertility assistance, regardless of the reason it is quite normal and common to have negative emotions and despair over it. We are grieving that we can't just get pregnant the same way other couples do. And it always seems like everyone around us is getting pregnant, sometimes not even on purpose and its a lot.

Its okay to feel that. If it hurts than maybe get some space between you and pregnant friends. Its okay to put your mental health first.

If possible could you see a counsellor. They can give you a safe space to express how you are feeling and hopefully some methods to cope.

I would say that just because someone else doesn't have the exact same issue doesn't mean they don't understand. A lot of us have had to deal with long waits, long roads, some are using donor eggs or sperm to avoid passing on genetic problems, etc. Don't compare your situation to theirs, just because its different doesn't mean your pain is less valid. And if possible try to allow yourself to connect in some ways. Maybe we won't understand the nhs research project side but some of us will understand the feeling isolated. It helps to know people going through similar even if its not the exact same.

But definitely I would talk to a counsellor and see about getting some help. I wish you all the best.

It sounds like you need to see a counsellor before you start any treatment if you're already feeling this way. It can be a really tough process, but for others not me it can be not that bad and quick. Unfortunately there's just no way of knowing, and you have the extra treatment to be thinking about. I bet your head is spinning. Good luck.

I am so sorry that you have to go through all this pain in this young age. The fact that you're just 24, doesn't mean that you don't have a right to feel sad, on the contrary, all your friends are having fun and travelling and you're going through something painful and traumatic. Huge hugs to you lovely.

And yes you're right about the loneliness, it does feel like that. I feel guilty for feeling lonely/sad/triggered/angry too. Guiltiness is part of the emotional roller coaster, unfortunately.

Keep strong and just accept that all your feelings are part of it, just go with it. If you need a chat dm me.

@AMN3000

I'm sorry you are going through that. It sounds like you are grieving. When we need fertility assistance, regardless of the reason it is quite normal and common to have negative emotions and despair over it. We are grieving that we can't just get pregnant the same way other couples do. And it always seems like everyone around us is getting pregnant, sometimes not even on purpose and its a lot.

Its okay to feel that. If it hurts than maybe get some space between you and pregnant friends. Its okay to put your mental health first.

If possible could you see a counsellor. They can give you a safe space to express how you are feeling and hopefully some methods to cope.

I would say that just because someone else doesn't have the exact same issue doesn't mean they don't understand. A lot of us have had to deal with long waits, long roads, some are using donor eggs or sperm to avoid passing on genetic problems, etc. Don't compare your situation to theirs, just because its different doesn't mean your pain is less valid. And if possible try to allow yourself to connect in some ways. Maybe we won't understand the nhs research project side but some of us will understand the feeling isolated. It helps to know people going through similar even if its not the exact same.

But definitely I would talk to a counsellor and see about getting some help. I wish you all the best.

Thank you for explaining the grief side of this, it makes sense when you put it like that. I have contacted the clinic about counselling and am waiting for them to get back to me. Thank you for your advice.

@IsabelHerna

I am so sorry that you have to go through all this pain in this young age. The fact that you're just 24, doesn't mean that you don't have a right to feel sad, on the contrary, all your friends are having fun and travelling and you're going through something painful and traumatic. Huge hugs to you lovely.

And yes you're right about the loneliness, it does feel like that. I feel guilty for feeling lonely/sad/triggered/angry too. Guiltiness is part of the emotional roller coaster, unfortunately.

Keep strong and just accept that all your feelings are part of it, just go with it. If you need a chat dm me.

Thank you, because of my disability I'm used to not being able to do things are people my age are doing. But the emotional side of this is extremely hard, it really helps to know you're not alone though, thank you so much!

@seven201

It sounds like you need to see a counsellor before you start any treatment if you're already feeling this way. It can be a really tough process, but for others not me it can be not that bad and quick. Unfortunately there's just no way of knowing, and you have the extra treatment to be thinking about. I bet your head is spinning. Good luck.

I'm waiting for the clinic to get back to me about speaking to one of their counsellors. Thank you so much

IVF can be really daunting and isolating at the best of times. This sounds even more to cope with. Please try not to be down on yourself for feeling this way.

It is a grieving process for me - I'm grieving that I might not have my baby, grieving that I don't get to just feel excited about starting a family, grieving that so many people are involved in something that should just be DH and I. It also makes me really angry that we have to go through this.

Definitely ask about specialist counselling. I find it helpful to talk to someone who is non judgemental and removed from the situation. DH does not, but that's how it is.

Best wishes to you with it all 💐

@CurbsideProphet

IVF can be really daunting and isolating at the best of times. This sounds even more to cope with. Please try not to be down on yourself for feeling this way.

It is a grieving process for me - I'm grieving that I might not have my baby, grieving that I don't get to just feel excited about starting a family, grieving that so many people are involved in something that should just be DH and I. It also makes me really angry that we have to go through this.

Definitely ask about specialist counselling. I find it helpful to talk to someone who is non judgemental and removed from the situation. DH does not, but that's how it is.

Best wishes to you with it all 💐

Yes I can empathise with all of the emotions you're experiencing. It is extremely hard to talk to my family, they just don't understand why I'm upset, they tell me I should be grateful and make me feel guilty or abnormal for feeling this way. But none of them have been through this and although they are trying to make me feel better by telling me to cheer up and saying it could be worse it invalidates my feelings. So speaking to someone who is removed from the situation would be much more helpful.

Best wishes to you too!