Natasha’s Story: A dermatomyositis diagnosis weeks after giving birth

Natasha shares her story of receiving a dermatomyositis diagnosis and how free support from the Wren Project was a crucial lifeline.

After I gave birth in July 2014, I began feeling extremely weak just a few weeks later. At first, I tried to rationalise it, but I’d had a baby three years earlier and this felt very different. I knew in myself that this wasn’t normal post-birth tiredness.

“As the weeks went on, the weakness became more noticeable. The moment that really alarmed me was struggling to lift my new-born baby. Having been through pregnancy and recovery before, I knew my body, and this was not how I’d felt previously.”

Blood tests quickly showed something wasn’t right, and I was admitted to hospital straight away. After further investigations, including a muscle biopsy, I was diagnosed with dermatomyositis in October 2014, at the age of 28. While the diagnosis was frightening, I’m grateful that the medical team acted quickly and took my symptoms seriously.

“One of the biggest challenges has been losing trust in my body and not knowing how it will respond from day to day. I’ve also had to grieve the person I used to be and the future I once imagined for myself.”

Another important learning has been the need to advocate for myself. I’ve learned how vital it is to understand what clinicians are offering, ask questions, and do my own research so I can take an active role in decisions about my care.

I’ve had to accept living with this condition, even though that hasn’t always been easy. Along the way, I’ve realised it has taught me a lot about myself. It’s shown me that I’m far stronger than I ever thought I was, and that strength doesn’t always look the way you expect it to.

“I’ve received listening support from the Wren Project, and my experience has been incredibly positive. The Wren team are truly amazing. You never feel judged, rushed, or dismissed they genuinely listen to what you’re saying and really care about understanding your experience.”

For me, the biggest support throughout my journey has been an excellent medical team and my mum. I’ve been under the care of the same consultant for the past 11 years, and while I know it’s her job, I’ve always felt a genuine sense of care and commitment.

Nothing ever feels missed or overlooked, and I’ve always felt listened to and supported. Knowing that my health is being managed by a team who truly care has made an enormous difference, and I’m deeply grateful for that support.

I would say that life is not over, even if it feels overwhelming at first. It’s okay to grieve, to take time to adjust, and to accept a new normal.

Take things one day at a time, be kind to yourself, and know that support is out there you don’t have to navigate it alone.

Living with an autoimmune condition has changed my life, but it hasn’t taken away my hope. If my experience helps even one person feel understood, supported, or hopeful about their own journey, then sharing it has been worth it.

Natasha shared her story with the Wren Project as part of our Wren Voices campaign. If you would like to share your experience of autoimmune disease with us, you can reach out by emailing hello@wrenproject.org.

If you are living with an autoimmune disease and in need of support, we are here for you. Our support is free and available quickly. You can get help here.