Lived experiences

Pregnancy with a Disability

August 1, 2022

Natalie Robinson
Natalie Robinson

Trigger warning: Mental health.

Pregnancy. Many hear that word and think of glowing skin, an exciting baby bump and eating for two! And yes, those aspects exist, but there is so much more to pregnancy. Even more so to someone with a disability.

For over 13 years, I've lived with chronic migraine, and since I can remember, I've always had anxiety. In many doctors' eyes, these aren't 'real', and I've often been waved off and dismissed. The result? I've had to learn to self-manage with no genuine support from the healthcare system. Like many of us, the system has let me down and told me that my needs are unimportant. This has become so much worse with pregnancy. With the historical feeling of letdown and disappointed regarding the health system supporting my needs, my anxiety about being pregnant and giving birth has become even worse.

This isn't my first pregnancy. I gave birth to my son in 2018, my darling boy Archer. The pregnancy was challenging; I lived with hyperemesis gravidarum (HG), also known as severe morning sickness. I was sick for a good 28 out of the 38 weeks I was pregnant. Imagine waking up every morning and not being able to eat until after lunchtime; that was my life. At that time, I was in my late 20s, in a demanding job, and kept pushing through. We welcomed our wonderful boy, and I did my best to navigate motherhood.

With the demands of motherhood, the pressure of being a good 'modern mum', and my then GP ignoring my pleas for help with my migraine and anxiety, I got postnatal depression. My chronic pain increased, my anxiety had become debilitating, and I was scared to leave the house.

Yet, even when I outright asked for help, I was told, 'It's just the hormones', 'It comes with being a Mum', 'You need to learn to live with it'. I've always wondered if they did this because they didn't believe in my migraine diagnosis. They always downplayed it and made out it was 'just a headache', which is very far from the truth. I always felt that my then GP didn't believe my migraine symptoms, and their response was often very dismissive when I asked for support. The same response came when I sought help for my anxiety countless times over the years (that's another story to be told on a different day!).

I was doing my best to juggle everything, while being unheard and my pleas dismissed. Once again, the health system let me down; even when I spoke up and asked for help, I was told no. My mistrust in our healthcare system continued to grow and later would trigger severe debilitating anxiety during my 2nd pregnancy. Experiences like mine are not rare; they are unfortunately widespread in New Zealand.

“I was doing my best to juggle everything, while being unheard and my pleas dismissed.”

Now, I'm about to have my 2nd child. I should feel excitement, joy and love for our new family addition. I do, but I also feel incredibly anxious, unheard and once again, dismissed. From early on in this pregnancy, I've known I would need mental health support, and support to help manage my migraine and pain. I was referred to maternal mental health in February, indicating I needed urgent support with my anxiety. It wasn't until June that I heard from them - because it was deemed I didn't need their support until my doctor pushed again.

I've always lived with anxiety, and with this pregnancy, it's amplified tenfold - the vivid pregnancy dreams have not helped the situation either. I know the health system is stretched, and the workers are overworked. I can't begin to comprehend the stress our healthcare workers are under. My challenges come from a broken system; a system that is not designed to treat everyone equally and fairly, a system that dismisses patients that need help until it gets to the dire point I am at.

The problem is invisible conditions like mine are perceived as not being 'that bad'. I know others who live with migraine and anxiety will understand just how challenging it can be in daily life, to feel heard by those around them.

To give you some insight, I often wake at around 3am with a vivid catastrophic nightmare - one my anxiety has created and has been festering in my mind all day. I wake up freezing cold and having an anxiety attack. My body then struggles from being in this heightened threat mode to wind back down so I can get back to sleep. I sometimes manage to get back to sleep at around 5.30am, then it's soon time for me to wake up again to start the day. This means that before I've even had my morning coffee, my body is in threat mode; it's tense, scared, and unsure of my surroundings.

“The problem is invisible conditions like mine are perceived as not being 'that bad'. I know others who live with migraine and anxiety will understand just how challenging it can be in daily life, to feel heard by those around them.”

The result is that I am in chronic pain, constantly tired and have a significant loss of appetite. It wouldn't have gotten this bad if I had been given the support I needed when I asked for it. Now, I will have major surgery (birth via c-section) and care for a newborn with an already drained body.

Fatigue and body tiredness are key contributors to postnatal depression. Sadly, I am not the only one; I know many women in the same boat as me. I'm a statistic like many others in New Zealand. I am the 1 in 7 who experience postnatal depression. I can only hope that the system gets better sometime soon, so fewer women have to suffer as I have.

In some ways, I feel like history is repeating itself, and I should have expected this. How could I have expected something different from a system that has failed me so many times? We shouldn't have to advocate for ourselves to get the healthcare we need; we shouldn't need to 'save up’ some mental strength to speak up and demand help; it should be readily available.

Interestingly, I am now getting better care through my openness about my distrust of the system. I have regular specialist appointments, plans are in place to help manage my anxiety in the operating theatre, and there have been discussions about finding long-term support for my anxiety and chronic pain, not just during pregnancy. A positive outcome overall, but one I have had to fight for.

Statistics:

  • Suicide is the leading cause of maternal death in New Zealand - PMMRC report 2020

  • 1 out of 7 women experience postnatal depression - Mothers Matter

  • Maternal suicide in New Zealand is five times higher per capita than that of the UK, with Māori women overrepresented - PMMRC, 2019