Dear Allison: I can't accept my child's disability - it's making me feel ashamed and low
Our resident psychologist answers your queries about sex and relationships - this week a concerned father voices his secret shame about his daughter
Q I am ashamed of my problem, which is why I am writing to you instead of talking to my wife. We have a child with profound disabilities. She is now three years old and is absolutely adored by my wife and her big brother, who is seven. We were a long time having her; she was conceived through IVF and I have a hard time dealing with the idea that she is here to stay. To be honest, I haven't got over the shock and I have not really developed any feelings for her. I bury myself in work and have distanced myself as much as I can from the family through 'legitimate' pursuits like work, shopping, etc. If it wasn't for my older son, I would leave. I won't though, for his sake, but I can't face the next 50 years of this. Can you help?
Allison replies: You recognise what's driving your avoidance, so you've already done really good work in identifying what's causing your distress. I'm sorry to hear what a hard a time you've been having and it sounds like you feel very isolated and alone with your shame, so well done for having the courage to try to see if there is a better way through this dark time.
There are so many layers in here - let's look at each layer, one at a time.
How was the IVF process/journey for you? How did you feel about it? Were any concerns, or fears that you had, heard and or understood?
In relation to your daughter, when you say 'I have a hard time dealing with the idea that she is here to stay', is this because of her ability to survive or live a long life, or is it coming to terms with what having a child with profound difficulties means for you for, say, the next 50 years?
Coming back to the shock, I wonder when you found out about your daughter's disability. Was it at the 20-week scan or when she was born? These questions are for you to see when the impact or the shock hit. Also, did you have a chance or any autonomy to make a choice about options? If you did have time, I wonder how this was for you, and for you both as a couple?
How was the relationship with your wife? When, or how did it change for you? What happens when you speak about how you feel? Are you connecting about how this is for both of you?
It can feel like a betrayal for parents to admit how they are feeling, especially when your wife and son have been able to connect. You can see how the shame builds and disconnects. It takes real courage to bare how you are feeling and you may be surprised by your wife's fears and feelings as well.
The only way to transform shame is to talk about those feelings. The ones we dare not speak of, for fear of judgement, guilt and more shame to be bestowed upon you. No one understands your family, except your family. There is a pretty prevalent 'illusion of moral superiority' that people think they would act differently in imagined moral dilemmas. Here's a reality check - you don't know how you will react until you are faced with it and in it for the long run.
Surround your shock and shame with compassion. Write down every fear, the emotional turmoil, guilt, sadness, grief, loss, anger, resentment and acknowledge each and every one and then buffer it with kindness. How to do this, is how you would support your best friend if they opened up to you and let them see you psychologically naked.
This can be painful but, ultimately, an immensely cathartic exercise. With shame, the isolation is compounded by the inherent despair at having such feelings or thoughts that you feel you 'shouldn't' have. Soothe the pain you have experienced, and allow the feelings to come. Cry if you need to; please don't block it. Sometimes, when you may be so used to stifling down your feelings of shame, it can feel like the pain and tears come from your chest and get stuck in your throat. It can be very helpful to connect to the feelings in your chest by placing one hand there and the other on your throat. This connection to your feelings from a place of compassion can unlock feelings that are literally 'stuck in your throat.'
When you feel ready, can you talk with your wife? I know you said your wife and son adore your daughter, but the healthiest thing you could do is to give each person their own space to talk about how they are affected.
Life is not made up of clean and tidy emotions, they are not linear, black and white or right and wrong. Often they are confusing, conflicting and darn right messy.
Have you spoken with a professional yourself or would you consider also doing this as a couple and as a family? You need support - start by giving it to yourself.
If you have a query, email Allison in confidence at email@example.com
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