To us, our fertility doctors and nurses are heroes, and for us lucky ones that have had successful treatment they have made a huge difference to our lives. However there are some things that patients wish they could say to their doctors, but daren’t in case they strike them off their list for being so ungrateful.
This may sound extreme to you, but when people are going through treatment, they are desperate for a baby and struggling to cope, so they’re not always thinking rationally. We put our consultants on a pedestal and feel we have to accept everything they say and do, without question, even if it upsets us.
I have heard a lot of feedback through the patients I work with and support, so wanted to create this article in the hope that it will help doctors and nurses understand how patients really feel, and also help everyone that is going through IVF know they are not alone and that it is ok to say how you feel and ask the questions you have.
These are all things that patients (from all over the world) have told me about their treatment.
- 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, 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 them advising you on all of the ones 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 had 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 heartbreaking. Please consider where you put your waiting rooms if possible, its 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 heartbreaking results. We feel like the support stops there until you go to your review appointment.
- 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.
- 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 heartbreaking journey every appointment.
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.
We want to say thank you for all you do for us, we appreciate you and will always remember what you do for us, regardless of the outcome.
Remember that it is always ok to ask for clarity if you are not sure on something your doctor has told you, to ask for a second opinion if you are not happy or confident with the care you are getting and it is ok to expect to be supported through your time with a clinic.
