Wren Voices: My Lupus diagnosis came in the midst of pandemic
In the first of our Wren Voices campaign, where our Wrens share their experiences of life with autoimmune disease, one Wren talks to us about the complexities of a Lupus diagnosis…
Lupus.
A small, seemingly insignificant word, unless you’re the bearer of this autoimmune disease. There’s no shame in not knowing about its existence. When I was first diagnosed, one of the consultants asked me if I’d heard of Lupus before, and was amused at my reply: “Ermm… something to do with wolves?”
As a young adult faced with a complicated diagnosis during the midst of the pandemic, I struggled to comprehend how my life, relationships, education, and my career could be impacted. It can be frightening when your first thought is to immediately check your phone, and absorb as many articles, YouTube videos and journals as you can. I had to actively prevent myself from doing this, because most of the time I didn’t know what to look for. Instead of searching for support groups and regulated charities, I found articles on life expectancy and long-term symptoms… not the most helpful things to look at when you’ve got the rest of your life to look forward to.
I have Systemic Lupus Erythematous. While I won’t treat you to the exact definition (feel free to look up), for me, that meant I sometimes have the typical butterfly rash across my face/upper cheek bones; experience joint ache ranging from mild-severe; struggle with fatigue; sun sensitivity and a propensity to ‘hate everybody’ when the pain gets too much. SLE means I’ve also developed a love for comedy; resilience; crazy-high pain tolerance; and an infinite amount of knowledge on low-potassium foods. It took me a while to learn how to manage my symptoms and learn more about the person I could be. Two years, in fact. Don’t be disheartened if you’re new to this; it takes time. Here are some of the symptoms that regularly challenge me and how I chose to manage them:
Sun-sensitivity: Buying myself a gorgeous pair of sunglasses, so I feel confident and comfortable wearing them.
Butterfly rash: Alas, I can’t remove it (it comes and goes), but I shake off the rubbish feeling by having a couple of skincare products handy when my self-esteem takes a hit. I find hand, hair, and foot masks are a great way to be kind to myself when I’m feeling down.
Joint pain: I’m still struggling with this one. I rarely wear short-sleeve tops or cropped trousers to avoid exposing my joints in the cold and have several hot water bottles handy. Being in tune with my body and learning how much is too much. On a good day, a light walk can be motivating and uplifting. Or sticking to “home workouts for over-50’s” can be a good way to prevent muscle wastage without over-tiring myself.
Fatigue: I don’t drink coffee, but I have treats to give me a boost when I’m low on energy. Also, just resting or lying down can give my body the downtime it needs. I’m careful not to overwork myself either – opting for hybrid or remote working means fewer commutes that can cause flare-ups and tiredness.
Loneliness: Sometimes it feels like nobody understands what you’re going through. The Wren Project was an amazing lifeline for me. My listening volunteer was kind, understanding and made me laugh despite everything. When I graduated, I joined the Wren Nest, and it was so lovely to hear and see other people who were going through auto-immune diseases like me. People bringing their tips and life stories have been immensely valuable and helped me to find new ways to manage my condition. I look forward to those Zoom sessions every month now.
I wrote this article, (ironically) late for Lupus Awareness Month, because I’d been amid another lupus flare-up. I think that also reflects just how hard it can sometimes be to manage a chronic condition. I did not expect to have several flare-ups this month, and sometimes my symptoms can get in the way of day-to-day life. But I have learned ways to lessen my symptoms and reduce my pain, so that I can still go on days out and spend time with friends and family. It took a lot of trial and error, but that’s part of the process.
To all those with new diagnoses, welcome aboard. Your symptoms will come like waves, (sometimes crashing, sometimes small) and over time you’ll learn how to ride it out. Learn to identify who you are, what you enjoy and what makes you laugh, so that if the pain ever becomes unbearable, you have reminders that you are more than your condition.
And to those who’ve been diagnosed (and re-diagnosed!) for a while, be proud of yourselves. Acknowledge how far you’ve come, and the obstacles you have encountered. And if you need someone to listen your story, and what you’re going through, The Wren Project is here to help.
Here at the Wren Project, we are here to support you. If you or someone you know could benefit from our free, one-to-one listening support sessions, please get in touch here for support.
Would you like to share your story in our Wren Voices campaign? Get in touch here.