Can you share a little about your journey and how you've navigated your diagnosis?
The chronic illness journey is like being stranded on a deserted island with an incomplete map and no way of getting off. My life changed overnight in 2021 when I was diagnosed with Systemic Auto-Inflammatory Disorder and went from working full-time to spending 37 days in the hospital, including five days in a coma. I've since undergone countless tests, scans, procedures, and surgeries, including multiple central line placements for high-dose immunosuppressants and immunoglobulins. This year, I received the news that I must undergo chemotherapy to further suppress my immune system. Chronic illness is a dynamic and unpredictable entity; one moment you may be following a trail on the map, thinking that all is proceeding according to plan, when suddenly the trail disappears and everything spins out of control once more, leaving you trapped on the island indefinitely.
How has living with your condition changed your daily life or perspective?
I vividly remember the day I received my diagnosis during a 34-day hospital admission. It was a moment that could have broken me, but instead, I chose to make it meaningful. As I sat there staring out of the window feeling somewhat numb, trying to process the news, I realized that I had a choice in how I wanted to react. I could let this experience defeat me, or I could find a way to move forward. I chose the latter, 'What can I do about it? How can I move forward?' and it was these questions, that were the turning point in my journey. By taking responsibility for my choices and mindset, I have been able to view the world through a different lens, find peace and beauty in every day, and had the ability to turn my pain into power through sharing my journey.
What strategies or routines help you manage your symptoms on tough days?
On tough days, I remind myself to show compassion and kindness to my mind and body. After chemotherapy, I spend 2-3 days on the couch in hibernation mode, accompanied by my dog, book, heat pack, medications, journal, and Netflix. I understand that rest is crucial for my body's recovery during these 72 hours.
4. Is there a particular support system or community that has made a difference for you?
I am so grateful to have a support network that inspires me to be the best version of myself. My mother's selflessness and unwavering support are a constant source of motivation and encouragement. She is my hero, my rock, and my guiding light, helping me navigate life's challenges with grace and strength.My friends and family are always there for me, sending messages and visiting me in hospital, making my life easier and more vibrant. They treat me with the same love and respect as they would anyone else, allowing me to live life to the fullest. I am truly blessed to be surrounded by such love and support.
What advice would you give to loved ones trying to support someone with a chronic illness?
Chronic illnesses are often invisible and extraordinarily dynamic in nature. And while we may be okay one minute, things can drastically change the next. Our symptoms fluctuate dramatically and wreak havoc within our daily lives, ruining plans, disrupting work schedules, and severely impacting our social life. While yes this can become frustrating to those around, please understand this impacts us even more so. The fact we must cancel or change plans because our bodies have failed us yet again makes us feel defeated, isolated, and alone. All we ask is that you treat us with a little understanding and compassion. And please never be afraid to reach out and ask questions or even ask how you can best support us during this time.
Are there any misconceptions about your illness that you'd like to address or clarify?
A big thing with a systemic auto-inflammatory disorder or chronic illness in general is that, despite the same diagnosis, no two individuals are alike. Thus, each person will have a unique journey with different treatment, symptoms, side effects, and pathways.
What message or encouragement would you give to someone who is newly diagnosed and feeling overwhelmed?
At first, it may feel like your entire life has been stripped away, leaving you feeling bare and exposed. However, this feeling won't last forever. With each passing day, you will take one breath at a time, slowly realizing that you are growing and becoming stronger. Remember to be kind to yourself and take things slowly. It's okay to feel a range of emotions, but also look for small things to be thankful for. Eventually, you will realise that you’ve grown from the struggle. And sometimes, just sometimes, the bad things that happen in our lives put us directly on the path to the most wonderful things that will ever happen to us.
And finally, What's your guilty pleasure snack that you can't resist?
Chocolate, seriously, it's my go-to treat when I need a pick-me-up!
Thank you so much Ebonie for sharing your story with us, if you'd like to keep up to date with her journey you can find her on Instagram here or Tik Tok here