To us, our fertility doctors and nurses are heroes, and for the lucky ones that have had successful treatment they have made a huge difference to our lives. However, there are some things that we wish we could say to our fertility clinics, but daren’t in case they strike us off their list for being so ungrateful.
This may sound extreme, but when we are going through treatment, we are desperate for a baby and struggling to cope, so we’re not always thinking rationally.
I have heard a lot of feedback through the patients I work with and support across the country, so wanted to share them in the hope that it will help doctors and nurses understand how patients really feel, and to help those that feel these things but daren’t say.
- Firstly, and most importantly, we think you are amazing! You are helping us to hopefully have our much longed for family and giving us hope, and for that we will never be able to thank you enough.
- Your words sometimes hurt – we know you see lots of patients and that you are the experts, but please be kind when you tell us upsetting information and don’t try to be funny. Please understand how heartbreakingly sad and tough this is for us.
- ”Every appointment is nerve-wracking; please imagine how you’d feel if you were the patient. Please try better to be kind and think about the tone of voice you’re using to deliver bad news. You see us, and cases like ours every day but to us this is unique, often new, scary and highly emotive. Just remember this, every appointment, every patient. Would you be so brusque and make ‘jokes’ if you were giving someone a cancer diagnosis? This process is serious, we’re not laughing so please try and respect that.”
- I understand that I need to lose weight, but for me it is another hurdle I need to jump, please be sensitive to this. I am overwhelmed and sad by not being able to get pregnant, now I can add feeling guilty that it’s my fault because I’m overweight. I need support, sensitivity to how low I feel and advice on how to lose weight in a sensible and realistic way.
“I’ve tried loads of different supplements and alternative therapy and I found that the hospital just looked at me as if I was a mug for buying into it. I’ll try anything if it helps, desperate maybe, but worth a shot in my book. It would be helpful If they would provide information of the whole range of supplements and therapies available rather than just shooting you down afterwards for doing your own research. I wish they’d just say it’s not their area of expertise and refer you to someone who is qualified to help.”
- Having to wait 4-6 weeks for a review appointment after a failed cycle is like torture. When you’ve been at the clinic every day during treatment, and then feel like your world has collapsed when you get your negative result. We just want to know why and what we can do next.
- Having to wait for appointments in a waiting room full of excited pregnant ladies is heart-breaking. Please consider where you put your waiting rooms if possible, it’s just another reminder of what we desperately want but don’t have.
- Getting a negative test result is devastating and we feel like we are all alone after we receive it. We have been with the clinic through every step of the cycle, and it suddenly feels like going cold turkey from the clinic whilst dealing with the heart breaking results. We feel like the support stops there until you go to your review appointment.
“I felt like I was on a conveyor belt and there was no recognition/familiarity, every fail I felt I was left abandoned and then when you finally get a feedback appointment the form is there to sign for another go. Cold process, box ticking exercises… No real investigations or follow up care apart from a letter saying you can access a counsellor if you want to. I’m left not knowing options really, now 40 and not considering IVF anymore although possibly would have another go, not sure.”
- We’d like more information about add ons – we don’t always feel informed enough. We understand that you don’t want to be seen as selling extra add ons, and that they are not all proven to improve success rates. But we Google things and we hear things from others about them, so we then feel that we’re not fully informed or being offered things that may help us. We’d love for you to talk through them with us, even if it is to explain why it’s not right for us.
- Lack of communication – To us, this is our whole lives. When we are going through a treatment cycle we are just waiting for that letter/call and when we don’t hear back from you, it makes us feel anxious. We also want to be fully informed on our situation and treatment. When we don’t know and understand, we feel out of control and start to imagine the worst.
- We have already planned out our cycle timings in our head based on when we think we will be starting. If we are delayed because a letter hasn’t been sent or an appointment has been missed being booked it is really hard to take. That is another month away from our chance of having a baby. Please understand this is why we are upset when this happens.
- Speaking to lots of different people in the clinic is a pain – when we call and have to repeat our story to lots of different people, it is really hard for us and can make it difficult to make discreet and quick calls.
- “Why make you see a junior Dr who has no clue how to answer questions or help other than do the admin tasks of a consultant. They have to learn but surely in the presence of someone who knows what they are doing? “
- Please understand that the process isn’t easy for us, it can be extremely undignified at times, and having internal scans by lots of different people isn’t our ideal way to spend time. Please be considerate and make it as easy and relaxed as possible.
“If you are a male medic doing a transvaginal ultrasound, for the love of god, PLEASE use lube! You might not have a vagina but in your job you are meant to be experts.”
- We know we are not your only patients, but this is our whole life and we want to feel that you understand and remember us, so that we trust you are giving us a course of treatment that is right for us and that we are important to you. We also know you are busy, but please scan our notes if you don’t remember our details so we don’t have to talk through our heart breaking journey every appointment.
- Please be mindful of your body language, we often read in to things too much because we are feeling sensitive, so if you look bored as we speak to you, we are unlikely to trust you to listen to our fears and help us in the way we need. We want to feel important and that we matter.
- Please be think about the tone you use when talking to us. You may have had a bad day, are feeling tired and be seeing your 20th patient of the day, but to me you are my life line. We want you to be fully engaged and committed to helping us to achieve our dream. If you are snappy, un-engaged, disinterested, it will show, and it will make us feel that you don’t care about us, that we’re just another number.
- We feel very emotional in appointments (as you will have no doubt experienced) and it is very difficult to take in information. Please be patient with our questions, we want to be fully clear on what is happening to us and the next steps. So, although you may have told us something already, we were emotional and scared so might not have taken the information in.
- Please don’t judge us – infertility can make us vulnerable, desperate and irrational. The things we say, do, want to try or believe will work may not be what you would recommend or expect, but remember that to us this is very real, and we are wanting to try anything. Don’t judge, just try to understand and advise as sensitively as you can.
- Put yourself in our shoes – we know that not all fertility doctors will have had fertility treatment themselves, so you are unlikely to personally know what it feels like, but it’s important to be understanding and sympathetic to our feelings and emotions. We are pumped full of hormones and are vulnerable, we need to know you care (and are not just saying it). Put yourself in our shoes and think about how you would feel if you were dealing with the same situation, have this in mind when delivering news to us.
- Don’t take it personally if we are short or rude to you, we know it’s not fair and that you don’t deserve it, but we are desperately sad, frustrated and feel out of control of our lives. The emotions and hormones don’t help. Please be kind to us and understand that we don’t mean to take it out on you. We’re likely to add it to our list of things to beat ourselves up about later.
- As older patients, please don’t call us geriatric and keep referring to our age – we are well aware that age isn’t on our side – constantly reminding us just upsets us. We know geriatric is a medical term, but please save it for the paperwork and use something more sensitive to our faces.
We know there are reasons for some of these things, and that not all patients feel the same. But this process is hard for us, and we struggle on a lot of days to hold it together.
What we need is empathy for how difficult this is for us emotionally, sensitivity to the fact we are vulnerable and consideration on how certain comments and behaviour will affect us.
Thank you for all you do for us, we appreciate you and will always remember what you do for us, regardless of the outcome.