Fighting Mum Guilt with a Chronic Illness
* Possible birth trauma triggers *
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IS IT SELFISH FOR ME TO HAVE A BABY?
It all started with this question, which I asked my rheumatologist. I was sitting in his office in crippling pain because I’d come off my medication for six months before even starting to try for a baby. One of my medications for my chronic illness can harm unborn children and they didn’t have enough data at the time to know whether or not my other medication could, so I had to come off both. I was three months into trying, nine months off medication, and my body was suffering.
I have autoimmune diseases under the ‘arthritis’ umbrella term: ankylosing spondylitis (AS: affecting mainly my spine and pelvis), psoriatic arthritis (affecting fingers, toes and other peripheral joints, plus psoriasis) and fibromyalgia (affecting muscles).
Mum guilt kicked in before I was even pregnant. I was in so much pain and worried about the times when I’d struggle with my arthritis in the future and how I’d cope with children being added to the mix. I also worried about whether I’d pass it on to my children. It’s a genetic disease and quite possible. Talking about limited treatment options whilst trying for a baby, I asked the question that had been bothering me.
“No, it’s not selfish, you have every right to become a mum,” came the response.
“But is it worth all of this?” I countered.
“As a father, I can tell you it really is,” he said.
I picked myself up out of the pity party and thought to myself that if it was meant to happen then it would happen, but I may not be able to carry on much longer. Maybe that would be a sign. As luck would have it, I was pregnant within the next month with my first child.
AM I TOO POSH TO PUSH?
The next round of mum guilt came whilst pregnant. I had a wonderful pregnancy, as the immunosuppressing side effects on my body were better than my medications (the hormones were tailored to my body by my body, after all) and I felt healthier than I had in many years. I already knew I’d need a caesarean section after conversations with my rheumatologist because the joints in the pelvis (the sacroiliac joints) that open up to ease a natural birth had fused. Where you normally see two lines down the pelvis, my scans show mine is smooth. A result of AS is that the body grows extra bone between joints, which causes the separate bones to fuse together. He had therefore already referred me to the obstetrician.
At my first appointment, the obstetrician told me that she couldn’t talk to me fully because she didn’t have my notes. It feels a bit prehistoric that they still don’t have a central electronic database for notes and that she needed my rheumatologist to send the paper copy, which hadn’t happened. She asked me why I felt I needed a c-section, which felt like she was saying it was my choice. As far as I was concerned, my body wasn’t giving me a choice because it would be unsafe to attempt a natural birth. But I started questioning myself: was I just being a wuss, and was I risking major surgery on a whim?
The logical answer was no, I wasn’t being weak and feeble, I did actually require c-sections to deliver my babies safely, for my safety as well as theirs. But logic doesn’t feature very much in a hormone and guilt-riddled mind. Even at my next appointment I was still made to feel like it wasn’t strictly necessary because the results of the first MRI, which stated where the fusion in my body was, had gone missing. All she had was the results of the second MRI, which simply stated ‘no change from first MRI’. Great! Cue mum guilt once more.
AN UNEXPECTED SURPRISE
My c-section was booked for 38 weeks and I had some comfort from my anaesthetist appointment, who reassured me when I voiced my concerns and stated in no uncertain terms that I absolutely needed a c-section and that it was her role to keep me safe. Unfortunately, at 37 weeks my waters broke at one o’clock in the morning and I had to rush to hospital. My daughter’s heart rate was dropping every time I had a contraction, so I was rushed into an emergency c-section.
There were complications with her placenta, and it turned out that having an emergency c-section early saved her life. The surgeon said that he thought she must have a guardian angel, and my mum later said (as she always said that everything happens for a reason) that this must be the reason I have arthritis, to save my baby’s life! It’s a very comforting thought.
Despite the sleepless nights and the relentless cluster feeding, I loved being a new mum. I was so lucky to feel such a deep connection so quickly, and although it wasn’t all sunshine and rainbows, I wouldn’t change it for anything.
I SHOULD BE ABLE TO PICK UP MY OWN BABY
Then the mum guilt reared its ugly head again when the wonderful pregnancy hormones started to wear off a couple of months in. I loved breastfeeding and didn’t want to stop, plus my baby was refusing point blank to take a bottle, so I didn’t feel like I could make the switch to formula in order to go back on my medication. But four months in and I was really struggling. There was an intense pain in my back, but the worst was in my ribs on the left-hand side. Every time I bent to pick up my baby, I would feel it spasm and I’d be grimacing every time I straightened up from her cot.
I was referred to physio to try and fix the pain, which they thought was a muscle issue. The massage from those sessions would leave me in agony for a couple of days afterwards, and it became clear it was actually a part of my AS that was flaring; inflammation where the rib bones joined the spine, causing big issues. It was clear that I had to get back on my medication, but that meant getting my baby onto bottle feeding exclusively, which was hard work.
We tried different feeding positions, different bottles, different teat flows, but nothing seemed to be working. The advice from the GP was very blunt: just stop feeding her. When she’s hungry enough, she’ll take the bottle. This was easier said than done, though. She could go for hours without having anything, just screaming the place down, making us both feel awful, and many times I ended up giving in and feeding her myself. This didn’t help the mum guilt. I knew I needed to stop feeding her because it was better for both of us for me to go back on medication, but I was finding it really hard to cope with.
TURNING THE CORNER
We finally managed it, and I was back on medication. It wasn’t long until I was back to feeling much better. The mum guilt didn’t go away, though. I’d feel guilty looking at the other mums in the playgroups on the floor playing with their babies while chatting away, when I’d often have to have a break sitting on a chair because it gets painful sitting on the floor after a while. I’d also worry about how things would progress as my daughter got older and heavier.
But it’s not nearly as bad as my imagination! I may not be able to do everything I am able to do but working on my mindset means I am grateful for what me and my body can do. I keep as healthy and active as possible, and my eldest understands that I have limitations, which means sometimes we’ll have to change our plans. She has a great sense of empathy, which she is teaching her younger sister, and I’m sure that will be a great character trait to take into later life.
I’m able to manage my condition better since going self-employed at the end of my first maternity leave. Working for myself means time to look after myself better. Mum guilt will always be there, but I am able to deal with it. My body has not failed me, it can do amazing things despite the issues. I have carried two beautiful girls who bring joy to everyone they meet. They are learning more about acceptance, pacing yourself and having empathy towards others, becoming well-rounded human beings. I have a lot to be grateful for, and that’s a much better focus to have. I don’t focus on what I can’t do, or what I may not be able to do in the future, I focus on what I can do and how to make the best of that now.
Alongside being a mum to two gorgeous girls aged four and two, Jen is an award-winning business owner of Fuzzy Flamingo, a book publishing company. With over ten years’ experience in the publishing industry, Jen is passionate about good quality books and making publishing simpler and more accessible to first-time authors. She’s based in Leicestershire and lives with her husband, kids and Doug the shug.
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