“Don’t let the diagnosis stop you if you want to get pregnant”
Kerstin Grentzelius has always wanted to have children, but when she got her rheumatic diagnosis, the doubt began to gnaw, and she wondered if it was appropriate. Today, she’s heavily pregnant. She thinks she has received good support from healthcare professionals, not the least since she has dared to be honest with her feelings during the pregnancy.
Who are you?
I’m Kerstin, 29 years old, and I live in Stockholm. I’m a specialist nurse working with young people having drug problems and mental illness. At the moment I’m on sick leave because I’m soon about to give birth to a little baby. I have ankylosing spondylitis, AS.
What was it like to get the diagnosis of AS?
In 2016, I got a vast back pain. There were many heavy lifts, overtime, and a lot of stress at work. Suddenly, I needed one hour to get out of bed and maybe two hours to get full mobility in my body. I thought my job had left its mark on me. At the same time, I felt “this isn’t normal,” and I sought care to see whether I had a disc herniation.
At the health care center, the doctor said she suspected rheumatic disease. I had to take lots of samples and was x-rayed. The tests showed a high level of inflammation and osteoarthritis in my right hip. She expected it to be ankylosing spondylitis (AS) and gave me a referral to a rheumatologist. Once there, I got the diagnosis AS confirmed.
I started taking biological drugs early, but since I denied being sick for a long time, I couldn’t take the injections myself. “As long as I don’t do it myself, I’m not sick,” I reasoned. I found it pleasant that no one pushed me, but it almost became a bit ridiculous that a specialist nurse couldn’t give her own injection. One day, during a time when life felt a little easier, I made my decision and started to give the injections myself.
What has your life been like after the diagnosis?
The time after the diagnosis, I had many thoughts to process. It was hard to see the body change—I felt swollen and gained weight from the pain relievers. I was exhausted, and the pain was arduous.
I also had to cancel many social gatherings, simply because I had no energy. I needed to sleep more and eat regularly, which is tricky in my job. It was tough on an existential level. I questioned my identity. I felt like “rheumatic Kerstin,” while I just wanted to be “Kerstin, who happened to get rheumatism.”
It took between one and two years to find the proper medication and create the conditions to feel good. When exercising regularly and taking my injections, I have basically no symptoms. It’s mainly my osteoarthritis that causes some problems from time to time. And I sometimes experience fatigue.
What were your thoughts about getting pregnant?
I have always known I want to have children. But after the diagnosis, I wondered whether I really should? Will I be able to take my medication if I get pregnant? Will the whole pregnancy be like a lengthy flare-up? I had anything from genetics to substantial risks in mind.
I had also lost a lot of my desire for sex due to pain and the relation to my body. From living with a healthy body, it suddenly felt so sick. How could I trust it to put up with a pregnancy?
We went to a lecture by the Swedish Rheumatism Association about sex and cohabitation. It was very encouraging. The sexologist and the occupational therapist arranging the meeting confirmed there is nothing strange about a changed desire for sex when you suddenly get a chronic disease.
We decided to try to get pregnant and went to the rheumatologist for family planning. We learned that I would not be allowed to breastfeed because of my medication. It made me sad, and I started to process that information. But once I was pregnant, I was told I was allowed after all.
What about the support during your pregnancy?
There have been many involved in this pregnancy; midwives, professionals at the specialist maternity care, and my rheumatologist. My rheumatologist was clear I needed specialist maternity care since I’m on biological medication.
When we first came to the specialist maternity care, I was shocked. I wasn’t prepared for how they work to prevent the risks caused by my disease. It was hard to hear about all the risks. I was worried, had anxiety, and difficulties sleeping. My midwife helped me to handle this. She explained that having the disease is not the same as the risks becoming a reality, but their job is to work preventively.
Now, the baby can be born anytime. I feel good, even though it feels a bit surreal. I’ve been on sick leave due to painful contractions, and it has actually been pleasant. I’ve been able to enter “my bubble,” get to know my new body, and—at my own pace—understand that I’m pregnant.
What would you say to others with rheumatic disease thinking about pregnancy?
Don’t let your disease stop you if you want to get pregnant. There’s so much appropriate help to get. I have realized that the more honest I’ve been, the better things turn out. Dare to be honest about how you feel—a feeling is not inaccurate!
I’ve understood many women live with AS, but there’s not much research about pregnancy and AS. My rheumatologist and I have been talking a lot, which has helped me. She makes sure to update me on the latest research, and I’m very grateful for that.
Comment: Soon after this blog post was written, Kerstin gave birth to her baby. They are all doing fine.