For years, Tamara D’s life was very active. She was in a busy job as a Human Resources team manager for a national construction business and frequently travelled around the country. She didn’t slow down in her personal time either. “I was at the gym probably six days a week. I was doing personal training twice a week, attending boxing classes, running, going for walks and swimming at the beach. All the things that seem like such a distant memory now,” she said.
Tamara has also been living with Hashimoto’s disease (a chronic autoimmune disease that affects the thyroid gland) since 2009. At that time, she had major changes and stress happening in her life which exhausted her. She developed pneumonia and was diagnosed with Hashimoto’s disease which she manages with medication.
Navigating Pregnancy with Rheumatoid Arthritis
In 2016, Tamara got married and she had a son the following year.
During that pregnancy, Tamara developed carpel tunnel syndrome, back pain and nerve pain. She saw her rheumatologist and had cortisone injections but they didn’t help her pain.
“It got to the point where I couldn’t walk properly or drive. My feet were hurting and swelling. I had to stop work because I couldn’t even type. Towards the end of the pregnancy, I was in so much pain and so swollen that my husband Julian had to cut up my food and feed me. I couldn’t even butter the bread because I couldn’t use my fingers. I don’t know whether it was all arthritis or pregnancy or a bit of both.”
By her six-week postpartum check-up, Tamara was still in a lot of pain. She was referred back to the rheumatologist who then diagnosed her with rheumatoid arthritis (RA). Normally, people with RA are prescribed disease-modifying antirheumatic drugs (DMARDs) soon after diagnosis. However, she was prescribed cortisone tablets to help manage her RA while she was breastfeeding.
After around six months, Tamara was struggling to produce enough breastmilk and it was apparent that she needed to start a DMARD to suppress her RA symptoms and slow disease progression. She tried methotrexate first but that made her feel sick so she started taking sulphasalazine instead.
“It was tough to deal with the mother’s guilt when I had to stop breastfeeding. I was also trying to process all the changes happening in my life and my body. However, it was a blessing in the end as I wasn’t struggling so much and my son was getting the nourishment he needed,” said Tamara.
Strategies and Supports in the Early Months of Parenthood
Tamara was quite frustrated after her rheumatology appointment as she wasn’t given much information on what to do next or where to find support.
“I went back to my GP as someone had suggested I get a care plan. She gave me lots of advice on things I could do to self-manage my condition as much as possible, including seeing allied health professionals. I saw a myotherapist, massage therapist, physiotherapist and a chiropractor. Some helped more than others and it was all trial and error. I also saw a dietitian, but I was overwhelmed with all the changes going on and I couldn’t manage changing my diet on top of all that,” she said.
After Tamara’s son was born, her mother stayed with them for a while to help. Her husband also helped a lot, but Tamara had to create strategies to manage on her own while he was working.
“I had everything set up so that I didn’t have to lift my son very much. I had the bassinet right next to the bed and the change table. However, I couldn’t lift the pram or baby capsule. When he started crawling, I couldn’t get on the floor with him. Instead, I had pillows that I could lean on to help me get from the couch to the floor and back,” said Tamara.
Parenthood, Arthritis and Mental Health Challenges
“When we started going to things like GymbaROO and music classes, everyone was on the floor with their bubs. I remember once just bursting into tears and leaving a music class because I felt like such a failure as a mum. I looked at all the mums on the floor crawling around with their babies and I thought ‘I can’t do that’ so I just left. It was tough. As my son got older, I taught him to climb into his car seat and use his little steps to get onto the change table. That made it easier for me,” she continued. A year or two later, Tamara was put onto a biologic DMARD which helped her immensely.
After her RA diagnosis, Tamara’s GP suggested mental health support to her, but she chose not to go down that path. “I wish I did as I think I am still holding onto a lot of stuff that I wish I had dealt with then. I wish that I had taken that opportunity and spoken to someone because, on reflection, my mental health wasn’t good for around four years after my RA diagnosis. I was in a bad place and didn’t want to accept it. I felt I needed to toughen up and keep going. I was also very lonely and felt like I was the only person in the world going through this,” she said.
Around 18 months after her RA diagnosis, Tamara felt her boss pushed her into going back to work part-time even though she didn’t feel ready. The hours she was offered were not ideal and she felt quite resentful, which didn’t help her mental health.
Dealing with Ankylosing Spondylitis and COVID-19 Lockdowns
Tamara’s back pain continued during her son’s early years. In 2019, she had a scan of her lower back which showed she had ankylosing spondylitis (AS) — a form of autoimmune arthritis that usually affects the spine and pelvic bones — and a bulging disc.
During Melbourne’s COVID-19 lockdowns in 2020 and 2021, Tamara’s husband worked from home so the three of them were living in a small space and trying to stay sane. Like many others, they found it hard to be apart from friends and family, especially those living interstate.
Although she continued taking her medication during that time, Tamara was terrified of being in public and potentially catching COVID-19. (A feeling shared by many people with autoimmune conditions even now.)
“I remember there was one point where I could hardly walk and I remember going to see the physio and freaking out. I thought, if I get sick, I don’t know what’s going to happen to me so I cancelled all my in-person health appointments and did the best I could at home,” she said.
Planning a Second Pregnancy
Before her daughter was born, Tamara left her human relations job and decided to start her own Human Resources business. “It’s all very flexible and on my terms now. It’s also better financially as I get a better hourly rate but work fewer hours. I work from home and plan my time around my health needs,” she said.
Tamara had conversations with her rheumatologist early on about possible plans for having a second child. Luckily, the medications she was already taking were safe to continue during pregnancy and breastfeeding. However, she was also concerned as she still had unresolved mental health issues from her first pregnancy. This time, she was also dealing with AS.
“Look, I’m not going to lie, I was petrified. I did not want to go through that again. I’d always thought that I’d want at least two if not three kids, but after what we went through with the first one, I just could not imagine going through it again,” she said. “I completely made peace with the fact that we had one amazing child and that was it for us. We’d get a dog and that would be the end of it. And I also remember thinking I’m just going to let the stress of it go and put the idea out there and see what happens. I became pregnant soon after that,” she continued.
When she learned she was pregnant, Tamara decided to embrace it as she was in a better place mentally. “Not that I wasn’t worried. I just felt more empowered this time as I have done so much research and connected with other mums with arthritis through an amazing peer support group. I also received lots of support from my medical and allied health teams,” she said.
Tamara’s second pregnancy went smoothly until close to the end. Her blood pressure was very high and she needed an emergency caesarean two weeks before her due date. Even so, she found her recovery easier as she knew what to expect and had coping strategies in place.
Creating an Arthritis-Friendly Home
Before their daughter was born, Tamara and her husband bought a single-story home so Tamara wouldn’t struggle with the stairs. They then renovated it so it was completely flat and arthritis-friendly.
“We built a bench into our shower and left enough space for a chair or wheelchair in case I need that in the future. We built a ramp to the front door and levelled out the driveway. We even built a little bay window with a seat so I could sit down and put my shoes on. These things look great but there’s also a purpose behind it all,” said Tamara.
Tamara’s Relationship with Her Children
“After my son was born, I felt like such a bad mum. I loved him and was doing my best to look after him, but I was also facing my own demons. I went into a black hole and didn’t want to exercise or do anything because it all hurt and it was all too much. This time, it feels different and I am enjoying it,” said Tamara.
“My son is very sporty and that has been challenging for me. I’d love to kick a soccer ball and run around the park with him, but physically I just can’t do it,” she said. “He goes for bike rides and plays sports with his dad. It makes me sad as I would love to be part of that but I also know my limitations.
Now we’ll go to the park and the boys will kick the ball while I push our daughter in the pram and it’s a bit more balanced again. I made a conscious decision to keep moving and to try and be as healthy as I could. I feel like suddenly I’m healed after all those years of carrying that trauma.”
Tamara is concerned about passing her health conditions on to her children. “I don’t know where mine came from, so it plays on my mind a lot. What’s going to happen to them? I just don’t know,” she said.
Advice for Prospective Parents with Arthritis
“If someone with a chronic condition like mine is considering starting a family, I believe the most important thing is to be informed and work out what support they might need. That way, they have time to create some contingency plans,” said Tamara. “Also, I don’t want to scare people, but genetic conditions can happen in anyone so I would advise prospective parents to learn what they can about their family’s medical history.”
“Above all, I would tell people to not be afraid to talk about their concerns and ask for help. It’s a lot to deal with and they don’t have to do it on their own. GPs and peer support groups are great places to start” she added.
“Yes, there will be good and bad days but that’s all part of the process. Try and refocus your energy. It’s an incredible, incredible journey and you just have to adapt and do what works for you. You can be a good parent. It doesn’t have to be scary.”
Further Resources
Suzie Edward May: Arthritis, Pregnancy and the Path to Parenthood
Elizabeth M Christy: Why Does Mommy Hurt?
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