My journey began five years ago, when I started to experience rheumatoid arthritis symptoms after the birth of my son. 
     
I was sent home from hospital a week after giving birth. Alone with a newborn, I found I couldn’t walk down the corridor to feed him in the middle of the night. I couldn’t walk anywhere at all. In fact, I couldn’t really do anything: even changing a nappy was difficult because my fingers were so stiff and swollen. I knew something was wrong, so I went to my GP who sent me straight to the emergency room. 

From there it was a process of elimination; months and months of appointments with specialists and test after test, trying to figure out what was wrong. During this time, I wasn’t able to have the right conversations with the right specialists, and my pain and symptoms were put down to the complications I experienced during labour. I was encouraged to just push through it. But I knew in my gut something wasn’t right. 

After 6 months I was referred to a rheumatologist who diagnosed me with rheumatoid arthritis. The relief that I wasn’t making up my pain was overwhelming. But at the same time now that I had an answer, I had to face reality: what did the future look like? I didn’t know anyone with rheumatoid arthritis, what did it mean for the mother of an infant? All I could think was, how was I going to change my son’s nappy and feed him? How am I going to play with him and kick a soccer ball when he got older? 

It was important to me to find a rheumatologist who understood my concerns and who took them seriously. Luckily, I found someone who was able to calmly and confidently walk me through all the treatment options available.  

Today I feel like I’ve found my groove most of the time, which is great, although some days are more difficult than others, my body mostly does what it’s told. I can kick that soccer ball with my son most of the time which is great although funnily enough he isn’t always that interested in soccer! I have taught him about rheumatoid arthritis, and he knows this is something I live with. Even as a five-and-a-half-year-old he can understand that sometimes I need a rest and need to just sit on the couch. That’s when we put on our favourite movie together.  

It’s important for me to have a game plan from the minute I wake up in the morning. I lie there and I assess my symptoms. Some days I have to accept my body is not going to be able to do it, while other days I think I can conquer the world. My game plan requires me to be flexible so I can take the best care of myself for my son. This also means asking for help when I need it.  

Even before being a mum and being diagnosed with a chronic inflammatory disease I struggled with asking others for help. But once I was diagnosed, I found that I had no choice but to be vulnerable and reach out to my network. And to be honest, there’s something lovely about being able to connect with friends and family on a different level and show them your vulnerability. People do generally want to help; they often just don’t know ‘how’. Over time I have learnt to be direct and just ask for what I need - and repay the favour whenever possible.  
    
Asking for help and speaking up is also important when it comes to managing your condition and building the right relationship with your healthcare team. To other women living with chronic inflammatory diseases, I would say trust yourself when something doesn’t feel right, whether it’s experiencing new symptoms, going through pregnancy or childbirth. As women especially, we must remember to advocate for ourselves, our health, and the lives we want to live. 

My disease hasn’t stopped me from doing things that I wanted to do in the first five and a half years of motherhood. It's just meant that I've had to do them a little bit differently.