My journey – from diagnosis, to marriage, to motherhood

by Hannah Layton

HannahAt the age of 27, I was working full-time as a teaching assistant and studying for a degree in my spare time. Although I’ve always wanted a family, I had no immediate plans to have a baby and my focus was firmly on my work and studies. That was until November 2016 when my knee started to swell. Fast forward a few months and, after appointments with several different doctors, I got my diagnosis: sero-negative inflammatory arthritis.

By this point, the arthritis had spread to my neck and I couldn’t turn or look up. More importantly, I couldn’t even draw my eyebrows on.

Back then, I knew nothing about arthritis. In fact, when the rheumatologist prescribed me steroids and I could walk and move again, I thought I was cured. How wrong I was.

I was signed off work for six months and I had to start making decisions about medication and the impact it would have on my future, something I’d never had to do before. I had a choice between sulfasalazine and methotrexate.

The only thing I knew was that my cousin had taken methotrexate to treat his leukaemia so I decided to do some research the only way I knew how, by Googling it. It was then that I read that methotrexate was harmful in pregnancy – this worried me A LOT. Looking back, I put blinkers on. I didn’t want to read anymore. I wouldn’t even entertain the thought of methotrexate and I spent the next year refusing it at every appointment.

The sulfasalazine wasn’t working so they prescribed hydroxychloroquine too. A year later and Kirk, my boyfriend of 10 years, (finally) proposed. That’s where shizz got real.

I graduated with a first (thank you, thank you 🙏🏼) and we planned to get married within a year. I knew once I was married that I wanted to start a family soon. Although I spoke to my rheumatology nurse about arthritis in pregnancy, there wasn’t a lot of support or advice out there. This was before I knew about Arthur’s Place and Project Mum!

I was told that arthritis being active can affect your chances of getting pregnant and that it’s best to get the disease under control for a year with methotrexate and then come off it for three months before trying for a baby. This could mean waiting another year and a half before trying for a baby and that was only if the methotrexate worked. The consultant told me ‘’you need to get your disease under control before you consider starting a family’’ and I left the room in tears. I refused it again.

Was I right to refuse the methotrexate? Should I have accepted it from the beginning? If I had I would be ready to come off it now and start trying for a baby. Will the active disease stop me from conceiving or has the arthritis made me infertile?

My head was frazzled and I had convinced myself I would never conceive naturally. I was majorly stressed and even started looking into adoption.

We got married two days before my 30th birthday in May 2019. We had the most beautiful day. Dosed up on a steroid injection and prednisolone, I was able to enjoy every moment.

But this is when my stress levels maxed out. I had put so much pressure on myself to get pregnant and it wasn’t happening. ‘’Try not to think about it… You won’t get pregnant if you’re stressed’’’. Easier said than done when you want something so bad.

In August, we took off on our honeymoon to New York and the Caribbean and I told Kirk we weren’t going to think about it any more, we were just going to enjoy our holidays. With a different focus, I relaxed immediately. I wanted to enjoy our first year of marriage as the two of us. Well, it must have made a difference because a month later I was pregnant. Neither of us could believe it. He would disagree but I think in my stress I convinced him it wasn’t going to happen too.

Everyone’s journey and disease is different. My aim isn’t to encourage people to refuse medication. Many people have gone on to conceive after taking methotrexate and looking back maybe I should have got my disease under control before trying to conceive but that is a decision I had to make for myself.

My advice to anyone reading this would be: demand answers, stay informed, and use the help available from Arthur’s Place and the National Rheumatoid Arthritis Society. Be in control of your medication. It’s your disease and you have the right to choose your path, but use the expertise of those around you.

Arthritis shouldn’t stop you from living the life you always imagined.

If you have questions like Hannah, please go to our Project Mum page and check out the series of videos by Dr Martin Lee, a consultant rheumatologist working in the North East of England.

He answers questions including:

  • Can I still be a mum if I have arthritis?
  • Can arthritis affect fertility and pregnancy?
  • When is the right time to have a baby?
  • Will my baby have arthritis, too?
  • How will pregnancy affect my arthritis?
  • Can I carry on taking my medicine while pregnant?
  • Will my arthritis affect the labour?
  • What might happen to my arthritis after birth?
  • Will I still be able to breastfeed?
  • What do men with arthritis need to know?
  • Who can I talk to about arthritis and pregnancy?

You might also find this helpful – mums from our Arthur’s Social Facebook group pass on words of advice to women considering motherhood: