Long read: Disability, pregnancy and me

Considered one of the most natural parts of life, trying to start a family is a time of excitement, nerves and questions. But, for many women living with a disability trying to conceive there are more questions than answers. What more needs to be done to support disabled women during pregnancy?

Across the UK, there is an estimated 1.7 million disabled parents in the UK, many living with sensory or physical disabilities. Each of those parents have one thing in common: striving to ensure their child has the best start in life to achieve all their hopes and ambitions.

However, prior to raising a child there can be some stumbling blocks, from conceiving, to medial support and even attitudes of the wider community.

FALLING PREGNANT

In 2019 Rachel Tait and her partner decided that they were ready to start a family – a whirlwind of positive emotions. Even so, the couple had questions on how to move forward with a healthy pregnancy as Rachel lives with seronegative rheumatoid arthritis and chronic pain.

Fortunately, Rachel had a supportive rheumatologist and strong family network, with Rachel’s rheumatologist providing a wealth of medical information. Medical support was plentiful, but Rachel felt the emotional guidance was lacking – all the way to conceiving.

“Nobody wants to talk about the fact that if you want to conceive you have to have sex, nobody talks about the fact that for some people that’s more difficult than others,” emphasises Rachel.

“If you’re trying to conceive that does mean more sex, and with chronic pain that sometimes isn’t an option. Nobody talks about that at all.”

In Rachel’s situation, it wasn’t until she picked up a leaflet on alternative positions – one which was not directly offered to her – that the couple could learn new ways to make the process of conceiving more comfortable.
This lack of awareness is a recurring theme.

Fi Anderson, who lives with muscular dystrophy and is a wheelchair user, was made to believe that because of her condition having a biological child would be impossible.

Fi explains: “When I did become pregnant, all the presumptions and negativity frightened me greatly. Everyone had painted this horrific picture with no real fact or evidence.

“My whole first pregnancy was plagued with this dark cloud that baby and I wouldn’t make it or I’d have to deliver baby early, and my fiancé would face raising our daughter without me.”

MEDICATION

In Fi’s circumstance, she felt the enjoyment of her first pregnancy was lost due to worry that her child might inherit a form of muscular dystrophy and negative perceptions from medical professionals.

At six weeks pregnant, Fi was advised to carry out an abortion after experiencing hyperemesis – an incredibly common symptom in pregnancy – as a doctor assumed this was due to Fi’s body not coping.

“That was my first real hurdle to get them to treat me like the average pregnant mum-to-be with extreme morning sickness,” remembers Fi.

I fought to change consultants and thankfully got a good one willing to trial medications usually reserved for chemo patients to deal with their symptoms, and it worked.”

Everyone has a unique experience of pregnancy, and for some women taking medication is a necessary process. However, Rachel felt the taboo of taking medication by other expectant-mothers and some medical professionals had a negative impact.

Rachel says: “That can be quite hard: throughout pregnancy with the normal midwifery appointments and anti-natal groups, it’s all really taboo if you’re taking medication. You kind of don’t get a mention if you’re on medication.”

Currently breastfeeding and not on medication, Rachel knows this will soon change and believes the emotional and mental health support in this instance is lacking.

EMOTION

“There will be a point where I will have to go back on medication meaning I will not be able to continue breastfeeding; there is a lot of practical and medical advice, but the emotional support is lacking,” Rachel emphasises.

“There is nothing to tell you about how it feels to be taking medication during pregnancy, the worry and anxiety you have, the risk – even though you have to be taking it.”

“It is important to be as well as possible to be the best mum you can be, and how it all has an emotional impact. When I have to stop breastfeeding that is going to have an emotional impact on me…

Everything is so catered to women having normal, healthy pregnancies: I wish I had known about the lack of support and I would have tried to prepare myself more for that.”

REWARDS

Despite the challenges faced by Rachel and Fi, alongside millions of other pregnant women with a disability, the rewards are worth the hardships. Fi has two healthy daughters and Rachel has a son.

The main advice when going through pregnancy with a disability is to know your own body, and speak out to get the right support. “Advocate for yourself, and don’t be afraid to ask for help and have honestdiscussions,” Rachel passionately adds.

“The only way we’re going to break down barriers is if we actually start talking about it.”

And Fi agrees: “I had to learn to advocate for myself and for my rights as a disabled parent… Don’t feel alone in your journey.”

Going into her second pregnancy, Fi learned to enjoy the experience and the excitement that comes with pregnancy.

“I learnt not to let the opinion of medical experts take away the joy of pregnancy and motherhood. You know your body better than anyone. If you believe your body has what it takes, that’s what matters – use that belief to get you through pregnancy and beyond,” says Fi.

It is evident attitudes around disability and pregnancy need to change, in order to provide women living with a disability the best experience during pregnancy.

Advice, support and lived experience is available from Scope, Muscular Dystrophy UK, and Enabled2Parent.