Pregnancy & Lupus – Rachel’s Story

Lupus Pregnancy - The Hibbs Lupus Trust

Following the birth of Rachel’s beautiful baby, she wanted to share her story for others to learn about pregnancy and lupus.

Apart from a short period of time where I promised myself and everyone around me that I’d never get married, unless he was the future King of England, I’d always assumed that one day I would grow up, get married and have a baby. When I was diagnosed at the age of 14, I still assumed that would all happen. I don’t remember exactly when it dawned on me that there might be a tiny flaw in my plan but it did. (And I’m not talking about the growing up bit!) Many of the medications I was on expressly stated that it couldn’t be taken if you were pregnant, or intending to be, and some articles I read said that these medications and lupus itself could affect your chances of even having a baby in the future.

The ‘stubborn little madam’ me was strolling around – well, coasting around in her wheelchair – flicking her hair and saying it was all so far in the future, this would all be done with by then and it wouldn’t be a problem.

Whilst the ‘thinks too much for her own good’ me was sitting quietly in the corner of the waiting room trying to rewrite her future in her head.

I told myself time and time again over the years that, when it came to it, I would deal with it.

I was so nervous walking into clinic and telling my doctor that I was ready to try for a baby but they’d seen it coming. They’d had a plan in place for ages just ready and waiting for me to come to this decision by myself. They must have a crystal ball because I’m convinced they do know me better than I know myself sometimes.

Everything happened so fast and I found out I was pregnant a lot sooner than anyone had expected. I didn’t dare believe that this was it. It couldn’t possibly have been that easy after all those years preparing myself for the fact that it was going to test my patience and our marriage to the very limit. But that easy it was.

I’m not saying pregnancy was a breeze. It really wasn’t. I coupled extreme morning sickness with starting a new job, trying to convince the whole world I was just having a bit of a flare as I threw up my lunch and stared intently at a wall in a meeting so I wasn’t sick on the visitor’s shoes. To this day, I couldn’t tell you what was said.

The hospital became my second home even more than usual and, towards the end, I needed a bit of a helping hand with some extra doses of steroids and some TLC but was it easier than I’d expected? Oh yes. One of my consultants commented that I was probably one of the only people he’d seen who was healthier pregnant than they were otherwise. I don’t know what that says about the state of my body before pregnancy, or since to be honest, but I’ll take it.

I was nervous every single day. I wouldn’t let anyone announce our pregnancy because I was terrified something would go wrong. I tried to keep it a secret from everyone at work, telling them I just looked awful because I was having a flare and my skirts didn’t fit because I’d simply eaten too many sausage rolls. I should have told them sooner as my colleagues would go out and buy me more sausage rolls to satisfy my cravings and I didn’t even make the most of it!

I was exceptionally well looked after by my medical team in Leeds and I trusted them implicitly. Every time we ventured out of the hospital’s boundaries I made my husband promise that, if anything happened, he’d get me back to Leeds rather than having to go to another hospital. It was a bit more difficult for him to agree to this when we went on holiday to Egypt – although I’d already cleared it with one of the doctors that he’d use his contacts to treat me via Skype should I need it.

I’ve never trusted my body to know what to do. It has always let me down but, when it really mattered, it pulled through and I will never fully understand why or how. From the very first moments of our baby’s existence, even before we knew she was ever going to happen, she fought against my body that sees fit to attack itself let alone anything else. She wasn’t to know the odds were stacked against her or just what it would take to get her here safe.

You don’t need to hear just how she arrived – let’s just say it took a while (!) – but seeing our little girl come into the world, calmly inspecting everything around her (just like her mother), I can categorically say that sometimes we are capable of more than we ever dare to imagine.

If you would like to share your story, please get in touch!

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