Chronic Illness, Parenthood and Grief.
Updated: Jan 31
⚠️CW: Pregnancy and baby loss, fertility grief, miscarriage. Absolutely no unsolicited advice in the comments please ⚠️
A lot of you may have seen Chrissy Teigen’s recent Instagram post about her miscarriage, and the subsequent vitriol thrown at her for sharing such a personal event online for all the world to see. Aside from the fact that it is obviously completely ghoulish to attack a woman who has just lost a baby, I think this also speaks volumes about the way society still treats fertility grief, miscarriage and baby loss in general. It seems to me that it is still considered taboo for a person to talk about this openly and unashamedly. A lot of people seem to think that it’s something women should deal with privately and quietly. Not for public discussion, kept behind closed doors, dealt with privately.
So I was really moved by the number of people in the comments thanking Chrissy for being so open, and sharing their own experiences of miscarriage and baby loss. So many of them said that they have never really talked about it before, and had always felt they had to keep it hidden away like some shameful little secret.
This got me thinking about my own grief around pregnancy and babies, and the way I censor myself when the subject comes up. It’s
obviously a deeply personal subject that not everyone wants to discuss publicly, but I wanted people to understand how many of us in the chronic illness community are dealing with this. I wanted to talk about openly as a way to understand it, to own it and to offer a little encouragement to anyone else in the same boat who is feeling like they aren't allowed to talk about it.
My grief doesn’t align with that of women like Chrissy. It doesn’t quite fit into any category I suppose. My grief is confusing, and hard for other people to understand sometimes I think. My grief is different because, technically speaking, I am choosing not to have a baby, so what group does that place me in? Am I even allowed to claim and acknowledge this grief?
I have never been pregnant. I don’t actually know if I can be. I have severe endometriosis and have been told that because of where my endo is situated it will likely be very difficult for me to conceive naturally. This of course doesn’t mean I *can’t* have a baby, I know plenty of mums with endometriosis. My point is that I have never been a mum and so I can’t possibly begin to even attempt to comprehend the sheer depth of pain that must come with losing a child, in pregnancy, birth or at any time. My heart goes out to anyone who has had to deal with this. It truly is one of the very worst things I can imagine.
My grief may be different, but it is not unique. I know through my conversations with my online friends that chronic illness has robbed so many of us of the chance to become parents. It’s not the case for everyone of course, but I always knew I wanted to be a mum. I love children, and starting a family is something my husband and I were so excited for. We talked about names - he vetoed mine and I told him his were boring. We imagined what they would look like - I pictured little red heads with wavy hair, freckles and a penchant for streaking like I had as a toddler. We discussed the ways we would raise them, what mistakes we would try to avoid, how we would prepare them for the world and how we would support and encourage them to love whoever they love, be whoever they wanted to be and encourage whatever it was they wanted to do with their lives. We thought we’d be great parents.
When I talk to other people about my grief, I think it can be confusing when I say I wouldn’t be able to manage a baby because I’m not sure they understand how sick I am. They only see me when I’m well enough to be seen - when I’m dressed and my make up is on and I’m smiling and laughing. They don’t see me at my worst when I can’t lift a drink to my mouth or tolerate any light or sound. So, the fact that I’m ‘choosing’ not to have a baby when I so desperately want one is confusing to them.
The fact is, I’m not really choosing it - my hand has been forced. Fertility issues aside, I may well be able to carry and give birth to a baby. But then what? I’m not well enough to wash my own hair or prepare my own meals most days, how would I manage to raise a child? I’m confined to my bed for three days after a trip to the supermarket, so how would I manage all the sleepless nights? I can’t even climb the stairs some days so how would I run around after a toddler?
Please don’t get me wrong - this is absolutely not to say that sick and disabled people can’t be fantastic parents. That would be absurd. I know heaps of sick and disabled people who have children and do a wonderful job of it every day. They make mistakes just like abled parents do, and there are days when it’s just all messy and complicated just like I imagine parenting is for everyone, but they are brilliant, attentive, loving parents. However, sick and disabled people are not a monolith. Just because one sick or disabled person is able to have children and raise a family, it does not mean that it’s possible for everyone.
Even people living with the same illness can experience it entirely differently, and there are so many factors that impact our experience of illness - poverty, race, access to appropriate healthcare and support networks. When chronic illness intersects with any of these other factors, it becomes much more complicated.
For me personally, unless I make a miraculous recovery in the next few years, I won’t be having children. I am simply too sick to raise a family. My illness came along like a naked Miley on a massive wrecking ball and shattered most of my life plans. I didn’t choose that. Who would?! Of course, life plans are always evolving and shifting but becoming a mum was always the one constant for me. Raising some little red haired, freckled cool dudes who would hopefully grow up to make the world a better, kinder place was the one life plan that never changed over the years, but sadly it’s now the one that is most inaccessible to me.
I know that some people see this as defeatism, or as me ‘being negative’. But for me it’s actually more painful to hold on to the hope of it than it is to accept the reality. It’s something I need to accept and grieve, in order to move forward and figure out how to build a happy life that is completely different from the one I had planned.
So, I’m sharing this today because I wanted anyone else in my position to know that it’s ok to grieve over this. You’re allowed to feel this loss. I’m so sorry you’re here feeling it too, but you’re not alone. I know how hard it is to see everyone else having babies, knowing it won’t happen for you. I know how guilty you feel for feeling jealous and a little resentful of your friends when they tell you they’re pregnant. I know how draining and confusing it is to feel happiness for others and sadness for yourself simultaneously. You don’t have to explain your grief to anyone if you don’t want to, and you are entitled to deal with it in whichever way works for you.
And remember, you don’t need children to make a family. Family can look however you want it to.