Loss and the community

The lowest time of my life was when I was going through pregnancy losses and infertility. The loss of my parents was less traumatic, both because it was signalled in advance, and because my life really was separate from theirs on a day-to-day basis. But the pregnancy losses, infertility, and discovery that I would never have children changed my life - or rather my vision of it at the time - in a fundamental way. There was a lot I had to come to terms with. Failure to get the outcome I had tried to achieve. Isolation and "otherness" from society. Recognition of my own mortality. Acceptance of my body's limitations. Judgement, pity, and condescension from others. The list is longer than this. I also remember a time when I really didn't want to go on. Though I'm glad I did.

I've been thinking a lot about that in recent weeks. How I don't want to feel those depths of despair again, but how I know I will. How I got through them and came out the other side. How I had my husband with me during that entire time. How physical touch said volumes when words couldn't. How isolated I felt from most of my friends who were actively parenting at the time. How finding my tribe online really helped. How my family wanted to understand but didn't. How people were afraid to talk about it with me.

It's weird how that going through a health issue is both similar and yet very different. Similarities include  finding that "worst case scenarios" can and do suddenly get worse and worse, and each time we adapt. Loving each other becomes so much more important. Taking enjoyment in the little things helps us cope. A focus on what's important - food, sleep, connection - also helps. Oh, and the platitudes too are the same. "It will happen" turns into "get well soon" or they'll "pull through, I know."  I'm remembering too that emotional turmoil is exhausting. 

But there are differences too. And whilst I'll talk about this more in the future. There's one difference that has been startling. Friends and family are concerned, offer help, send or bring food. I've told them to pace themselves - at the moment we don't need too much. There is community support, both in health terms and in support networks. So far, no-one has really distanced themselves from us - digitally or physically. Certainly not unexpectedly. But having a particular illness that is known and understood in the community, even if it is rare and aggressive, brings connections and support that pregnancy loss and infertility did not. There isn't the shame or judgement or just silence that I experienced around infertility and pregnancy loss. 

Isn't that sad? Even though I welcome that unfamiliar level of support today, I feel sad that people going through infertility right now still feel that isolation. And just want them to know that we have been there, and understand, and send love.