Learning to 'go gently'
I was diagnosed with rheumatoid arthritis in 2015. RA is an autoimmune disease where my body mistakenly attacks my joints, causing inflammation and stiffness. It has been well managed by medication for years, but the other week I had a flare that was so acute I struggled to walk or dress myself, and needed help to get in and out of bed.
I haven’t felt like that since I was first diagnosed so it came as a shock to me. It left me unable to work or plough on with the normal juggle of everyday life as a working mum of three.
Like most people, I feel like I am constantly spinning plates while trying to give the impression I have everything under control. My mind jumps between all the tabs I have open: have I remembered to order the school lunches/ I still haven’t cancelled the dentist/ I need a birthday present for a 5 year old/ I haven’t called that friend in ages/ I really need new pants/ I must organise a play date/ Kid 1 needs to take in a shoe box/ when was the last time Kid 2 pooed…… the list goes on and on.
I am sure most women can relate, as it tends to be us who carry this mental load of family tasks. The pressure for us to do it all is massive, and we aren’t taught how to navigate that. Often, everyone else’s needs are put before our own. We put ourselves to the bottom of the list.
My RA flare forced me to stop, to prioritise myself, and to close some of those tabs. I physically and mentally could not do it all. It was a very hard week, but I got through it.
As we have been highlighting Women’s Health Month at LionHeart this month, I thought I’d note down my thoughts on some of the things that helped me cope during this recent flare, in the hope that it might help anyone else living with a long-term health condition and trying to ‘do it all’.
Be open
When you have an hidden illness like RA, it is impossible for people to understand your challenges and struggles unless you tell them. I am sure most people forget I have RA because it’s well managed and I live an outwardly normal life.
I’ve recently opened up to colleagues, explaining that I am in remission because I self-inject medication twice a week, and I was thanked for my honesty. And that has really helped now I am in this flare as there was an understanding already, and they have been very supportive. I also try to share, mainly through social media, as a way of increasing awareness of RA.
Ask for help
I find this very hard as I am independent, and someone who likes to help others. But I reached out to friends and family the other week, and it made my life easier. I don’t like to feel like RA makes me weak, but what this helped me to learn was that instead of feeling like a failure for not being able to do it all, I actually felt loved and supported.
Let things drop
As a mum of three primary school aged children, there is always somewhere to be. If I’m not working I’m dashing between appointments, activities, and clubs.
When the flare started my head was spinning with how I would get it all covered. But then I realised it didn’t all need to be. The orthodontist appointment was important, the weekly swimming lesson less so, so I let that drop and focused on what was actually needed.
Reminding yourself of your strength
For the first time in ten years I took a video of me struggling to get down the stairs (below). It’s hard to watch but I know I’ll look back and it will help remind me how far I have come. I find making notes also really helps; just writing this is cathartic and will help me reflect on this period of struggle.
Try to find a positive
My kids have seen me cry in pain and I feel awful that they’ve seen that, and that it’s upset them. My children have never really seen me suffer before, which has given them no context as to why mummy takes her injections.
The positive side of this is they’ve asked loads of questions. We’ve had open conversations about how long I have had RA and how it has changed my life. I hope this will lead them to become empathetic and compassionate individuals. It’s not always easy to find a positive, but I think practising gratitude daily has helped me here. Taking the time to practise this skill is really beneficial.
Find a listening ear
I did something new during the week and called the RA charity NRAS, which has a helpline for support.
I think working for LionHeart, and seeing firsthand how our amazing support team help the surveying community, gave me the confidence to pick up the phone to seek support from my community.
They were so reassuring, full of great information, and basically made me feel heard. They reminded me ‘this flare will pass’ and told me ‘go gently’ - two things I repeated to myself all week.
Now I am coming out the other side of this flare, I want to try to hold on to the strategies that helped me through it, and try to lean on them more even when things aren’t at crisis point. The pressure to be superwoman comes from so many sources - I am going to try to remove myself as one of them, and to pat myself on the back for doing a good job under challenging circumstances.
If you are struggling with your health, be that physical, mental or both, I see you and I send you my very best wishes. Go gently!
Lucy Wright is LionHeart's Corporate Partnerships & Fundraising Executive. She has spent 10 years living with rheumatoid arthritis and is mum to Freya, 11, Jonas, 7, and Erin, 5 (pictured above)
Find out more:
Talking Women's Health in the Workplace
Don't miss this recorded panel discussion with some of the LionHeart ambassadors talking about women's health - especially in a profession where they're in the minority.
Click on the image or watch it here
