The Invisible Pregnant Unicorn
When you live with a chronic illness you can sometimes feel invisible. I’ve recently learned that being pregnant with a chronic illness means I am not only invisible, I am also a mythical creature. Right now, I feel like a pregnant unicorn and not a very glamorous one. Having Hyperemesis means I feel like a unicorn that got hit by a truck who then has to run a marathon (for my experience with Hyperemesis click here). Don’t get me wrong, I am thrilled to be pregnant, but like any first-time mum this is a whole new world to me, and my health is a major added complication. A simple search on Google or Facebook will throw millions of ‘new mum’ and ‘pregnancy support’ groups at you. A search for support for chronically ill pregnant women yields one. I managed to find, and join, one group specifically aimed at chronically ill pregnant woman. It isn’t enough!
I knew when we began trying to conceive that my journey with pregnancy wasn’t going to be the norm. Every aspect of this pregnancy had to be planned with precision. A lot of medical advice had to be sought. However, we wanted a family and we were determined to make that happen, even if it was challenging. I had countless appointments with my specialists. I changed a lot of my medications due the potential dangers of falling pregnant on them. These changes ultimately led to my disease being extremely active during the period we were trying to conceive. I was in a lot of pain but it was pain I was willing to go through. I’d like to point out that being in that level of pain makes getting pregnant even more challenging for several obvious reasons (but no one talks about that).
Is it just me?
Thankfully I did fall pregnant and we are so excited (and terrified) to be starting this new chapter. However, being a member of “normal” pregnancy groups has highlighted that my experience is not, and will, not be typical. I set about researching Rheumatoid Disease and pregnancy. Spent time researching chronic illness and pregnancy. I searched desperately for support groups and real life experiences relating to those things. I found hardly anything. There was the typical “information” on medical or charity websites, but none of that told me how it felt to go through pregnancy with a chronic illness. I wanted real life experience, answers to questions that only someone who had walked this path could answer and yet the amount of information available was startlingly lacking. I felt like I was the only chronically ill pregnant woman in the world, which is ridiculous.
What is it that makes people think that people with chronic illnesses or disabilities don’t want, or can’t have families? We are not mythical creatures; we are women going through pregnancy with a slightly different set of circumstances. I’d like to take a moment to point out that information and support specifically for disabled/chronically ill partners and partners of those who are chronically ill in relation to navigating pregnancy and becoming a parent was also lacking. This has as much impact on my husband as it does me and yet apparently, he’s a mythical creature too. Who marries disabled people after all? I mean seriously are we living in 2019?
How will we cope?
One of my biggest obstacles to date has been the welfare system. If you try googling “ pregnancy and Employment and Support Allowance (ESA) or Personal Independence Payment (PIP)” nothing of use comes up. I spent 70 minutes on the phone to Citizen’s Advice recently trying to find out how becoming pregnant can impact ESA and PIP. Would it trigger reassessment? Would they try to move me onto the dreaded Universal Credit (UC)? At what point did I need to declare my pregnancy to the Department of Work and Pensions (DWP)? I was stuck for answers and so were the agencies trying to support me. No one seemed to know if getting pregnant would affect those benefits. No one seemed to know the answers to my most basic questions. Being pregnant doesn’t change my disability, so in my eyes it shouldn’t change my claims. However I needed definitive answers.
I waited weeks for answers; all the while wondering if I was at risk of losing money we depend on to survive. Would I rather work and be querying maternity leave right now? Of course, but that is not the hand I was dealt. Being a mum will be my new job, and one that will give me a sense of purpose that I haven’t felt in a long time. Being a disabled mum won’t make me any less, and my health isn’t a reason not to have a family. So why does the government and DWP seem to think it is? After four long weeks I finally have some answers to those questions, which I will share in a separate article.
Sharing my journey
Potential changes to disability benefits is only one of the additional challenges I face because I’m chronically ill and pregnant. As I continue on this journey I’ll be sharing lots of information about the impact of chronic illness on pregnancy. If it makes one other person feel less like a pregnant unicorn, and less alone, then it’s worth it. I’ll be sharing articles about our decision to have children when I’m chronically ill and trying to conceive when chronically ill. My own experiences around the impact of Rheumatoid Arthritis specifically on pregnancy and more general articles about the challenges chronic illness can present in pregnancy and overcoming them.
If you are chronically ill and thinking about trying to conceive, actively trying to conceive, pregnant or have recently become a parent then feel free to join my new Facebook group Chronic Illness: Pregnancy & Beyond. I decided to start a support group because there is a distinct lack of support in this area for the disabled and chronic illness community and I’d like to change that.
