I last sat down to write an article for my blog in July. Five months have passed since then and so much has changed. I have made no secret of the fact I found being pregnant and chronically ill extremely challenging. I became too unwell to blog during my pregnancy and after birth I needed some time to reflect before “putting pen to paper”. As we start a new year it seems fitting to begin writing again, this time with a baby strapped to my chest.
I wanted to take some time to unpick my pregnancy and look at how having chronic illness, and chronic pain, shaped my experience. Here are eight things I learned being pregnant and chronically ill.
Planning is essential
One of the key things I had to consider before trying to conceive was what I would do about my treatment plan. I had to work with my doctors to make changes to my medication to ensure falling pregnant would be safe. It wasn’t straight forward. Some medication I had to stop several months in advance. Some I could take whilst trying to conceive but had to stop as soon as I fell pregnant. Others I was safe to take throughout pregnancy. Trying to get pregnant when chronically ill requires careful planning and coordination.
If you want to try and conceive and have a chronic illness then I’d recommend speaking to your medical team well in advance. It’s important to have a plan in place for your treatment while trying to conceive, and while pregnant, when you are chronically ill.
You will have lots of appointments
During pregnancy my RA didn’t ever go fully into remission, I still had to take medication to control and manage the disease. As a result of this I needed additional appointments with an Obstetrician. I also had to have extra scans to monitor my baby’s growth and development. My Obstetrician and Rheumatologist had to work together closely to manage my treatment and changing pain levels in a safe manner. All this was on top of regular appointments with a midwife and “normal” scans.
You are not immune to pregnancy related illnesses
When I fell pregnant, I naively only considered how my existing health conditions would be affected. I did not for a second think I would end up with a pregnancy related illness on top of my Rheumatoid Arthritis (RA).
From week five of my pregnancy I experienced Hyperemesis Gravidarum and it lasted right through my pregnancy. Anyone can get this, and there is no real way to prepare for it, but it definitely made things a lot tougher when combined with my RA. Being pregnant and chronically ill was hard enough. When you added in pregnancy related illness, there were some days I wondered how I survived.
For more about my experience with Hyperemesis click here.
Remission is not guaranteed but enjoy the good days!
When I found out pregnancy could lead to remission of my symptoms, I felt like it was a given. In reality it was a possibility, not a guarantee. I experienced some remission in pregnancy; the pain in my small joints improved greatly. I also experienced improvement in my spine in the early weeks of pregnancy. However, as the weight on my hips/spine increased with the weight of carrying a baby I experienced much worse pain than usual. By the end of pregnancy is was excruciating. However, I enjoyed every single day that the pain was less and made the most of it.
Make the most of any improvements you experience during pregnancy, even if they’re short lived. Try not be disheartened if you don’t experience total remission, you are not alone if you don’t. In the first half of my pregnancy I experienced days where it felt like I didn’t have RA at all, and that was amazing! Most days though I experienced some level of pain. Some days it was less pain than usual, and some days it was much worse. The important thing for me, was that I made the most of the good days!
The world of pregnancy is geared towards healthy/able women
I was aware from very early on that there wasn’t much support available for women who are chronically ill and pregnant. I found a distinct lack of information as I considered the challenges I may face as a chronically ill mum and how to tackle them. However, it became even more apparent when I attended antenatal classes. None of the advice or information given out was geared towards mum’s with disabilities or chronic illness. On more than one occasion after a class I sat in my car and sobbed. My journey was so different to the one these classes were describing and it was impossible not to compare myself to women having “healthy” pregnancies.
In the antenatal classes the midwives and health visitors discussed lots of ways of managing normal pregnancy pains and paracetamol was viewed as a last resort. It left me feeling quilty. I was taking eight of those a day just to keep some sort of handle on the pain. Then there was the stronger painkillers and other medications to keep my RA, Hyperemesis and pain under control. I felt very lonely during a lot of my pregnancy. This was mostly due to the fact that the world of pregnancy is geared towards healthy/able women.
The pregnancy apps, books and classes are all geared towards “normal” pregnancies. I felt so lost when I would research how to do something. The recommended way was so often something I knew I wouldn’t be able to physically manage. I ended up turning to bloggers for answers. Reading the experiences of disabled and chronically ill mum’s who had walked the path before me helped no end. I also set up my own support group on Facebook after finding a distinct lack of pregnancy groups for chronically ill mum’s.
Your pregnancy might not be enjoyable and that’s okay
One of the hardest lesson’s I learnt while being pregnant and chronically ill is that pregnancy isn’t enjoyable for everyone. I battled chronic pain, fatigue and severe sickness throughout my pregnancy. I was admitted to hospital numerous times and a never-ending list of appointments, scans and clinics.
It was really hard to see, and hear about, other women really enjoying their pregnancies. I felt guilty for not enjoying my own; and guilty for envying women having good pregnancies. I wouldn’t have wished mine on my worst enemy. I could barely eat, was nauseous 24/7 and so sick. The second half of my pregnancy I was crippled with pain and fighting every single day to make it to 37 weeks when an induction would be safer. I hated being made to feel like that was supposed to be enjoyable, or I should be grateful. You can be grateful for your baby, and still hate every single second of pregnancy. It’s okay to hate being pregnant. It doesn’t make you a bad mother, or mean you love your little miracle any less. It is, after all, a means to an end.
For more on this see my article ‘Stop Telling Women to Enjoy Pregnancy’.
Your support network is everything
I would not have survived, mentally or physically, without my amazing support network. My husband, family and friends were incredible throughout my pregnancy. I am so incredibly fortunate to have the support network I do. The practical and emotional support they offered during my pregnancy was second to none.
Surround yourself with people who will love and support you during your pregnancy. Surround yourself with people who will understand that pregnancy may be tough for you, and who will be patient with you when you aren’t your usual self. Taking care of your mental health in pregnancy is vital, and your support network is key to this. For a great article about mental health and pregnancy click here.
Accept help when it’s offered. I am the worst offender for not accepting help often enough, and powering through to the point of total breakdown. During pregnancy I was forced to accept help because I had to consider someone other than myself. It was a very important lesson for me to learn, and perhaps the most valuable one I learnt during pregnancy. Learning to accept help proved invaluable during my pregnancy (and after birth).
It is all worth it
The most important thing I learnt about being pregnant chronically ill, was that it is so very worth it in the end.
Was it tough being pregnant and dealing with chronic pain and fatigue? Did it push me to my mental and physical limits? Yes. Do I wish I’d had an enjoyable pregnancy? Do I wish I’d marked every milestone? Am I sad that I didn’t celebrated each passing week with a bump photo? Yes, that would have been amazing, but it wasn’t my experience and that’s okay. My journey was meant for me and at the end of that journey, I got the most amazing reward. My beautiful, perfect baby boy. No matter how tough my pregnancy was, it was worth every single second.
If you’re chronically ill and trying to conceive or currently pregnant, then feel free to join the support group I set up on Facebook – Chronic Illness, Pregnancy & Beyond.
