Genetic Disease in the Family

This is the big one. About 2 ½ years ago my mother-in-law was diagnosed with a pretty devastating neurological degenerative disease (even if relatively mild in her) that has a 50% chance of being passed down to my husband and therefore a 25% chance of cropping up in my two adult children (with the associated risks of passing the condition to any future children they may have).

This turned my life upside down. Overnight, my life expectations were changed from “normal” (ie my husband and I grow old and my children grow independent/are hopefully there for us in emergencies) to “my family is collapsing around me – after years of taking care of everyone, I will still need to take care of everyone until I die” because of course I am assuming – and there is a statistically high risk – that they all have this gene.

There are just so many aspects here. To name but a few:

1. Watching (and to a lesser extent helping) my husband organise care for my mother-in-law in the knowledge that this might have to be done for my husband/children in due course.
2. To test or not to test: initially my husband and I wanted to test but have been advised that this can take the shine off the rest of someone’s life should they get a positive result. Also (1) a positive test would mean that our children’s risk would then rise to 50% and (2) one child would want to know the result of the test and the other doesn’t which would necessitate a big secret in the family.
3. Carrying the sorrow/denial of my children: both are equally at risk and have to live with that plus one of my children already has an autoimmune disease he has to manage. I don’t know how to help them: on the one hand I feel like saying “enjoy life while you can – don’t worry about the future” but on the other this goes against my belief of saving for tomorrow/“bread today, jam tomorrow” that I was brought up with. I also have my own views about whether they should look at “screening out” the gene when considering starting a family. I have done a lot of work on this and hopefully be content with just making sure they have all the information themselves in order to choose should they wish.
4. Vigilance for symptoms in my family.
5. Carrying this burden – my husband didn’t want me to tell anyone. This is easier now with the passage of time plus I have spoken about this to a few good female friends. However, carrying on life with the vast majority of people not knowing about this huge elephant in my room can sometimes feel not just overwhelming but inauthentic. It’s just not me to keep it inside, but it is the sort of thing that would make people look differently at my husband should they know. Although the risk of disease is with him, the consequences are also with me. Is it his secret or is it mine to keep?

Over the last couple of years, my attitude has gradually evolved into “there is nothing I can do about this, so I might as well enjoy life/life with my family whilst I can” and I have been more proactive about organising holidays together, prioritising my time better and making sure I have my escape route/venting space (my horse and friends). Part of this is dialling down work (which I do not enjoy but feel obliged continue).

I would love to have pointers on all of the above aspects but realise that such a huge subject cannot be covered in one space. I think for now my questions are:

1. How can I make myself more comfortable with living with uncertainty?
2. Why do I sometimes struggle to make time to have fun and enjoy my immediate family? I know that my early programming was to “be a good girl”, work hard and save for the future, but it feels like the future is now which puts an enormous pressure on each moment. How can I shift to living more to enjoy now without going too far the other way? Is there a “too far the other way”?

Thank you.

Answer:

You’ve spent 2.5 years of your life exploring all of this. What have you discovered? What have you learned? What have you processed? Where do you still want to explore more?

Look again at the question your asking. At its core, to me, it sounds like your goal is to endure this terrible thing. Which you can do. That is absolutely available to you. We are always allowed to let our circumstances dictate how we feel. It’s just a lot more enjoyable when you don’t. What are you certain about? What do you know about you? What are the facts of your life?
Why do you think you shouldn’t struggle to make time to have fun and enjoy your immediate family? Why does it make perfect sense?

Answer your own questions and see what you find. Ask powerful questions about what you want, not what you’re afraid of. See what you find and bring back any models or insights you want more coaching on. This is the perfect time to get some clarity on this.