The Chronic Illness Chronicles: Sisi Alfred

Sisi is a 25-year-old living in the UK. She works with children with special needs while working towards a masters degree in translating. She loves nature, long walks, running (when she used to be able to), animals, reading and food!

WHEN WERE YOU DIAGNOSED WITH LUPUS?

I was diagnosed with lupus 7 months ago but have been suffering with it for about 3 years now.

HOW HAS IT IMPACTED YOUR LIFE?

It completely turned my life over as I no longer have the energy I used to have. And due to the nature of my illness, I never know how I’m going to feel when I wake up every morning. It’s impacting my relationships with others. Not everyone can understand or relate to what I’m going through. It also has an a massive impact on work (I spend a lot of time in hospital) and in my day-to-day life. It’s hard to function and run a household especially when the pain kicks in. I’m also a mother, so this obviously affects my daughter in a way. She is too young to understand that mommy’s sick so we get by but I’m scared about our future.

WITH LUPUS, WHAT HAVE BEEN THE HARDEST THINGS TO DEAL WITH?

The hardest things I’ve dealt with due to having lupus are Post Traumatic Stress from spending so much time in the hospital and anxiety & depression.

WHAT HAVE YOU LEARNED? WHAT POSITIVE IMPACT HAS LUPUS HAD ON YOUR LIFE?

It’s a very cruel thing to live with but it has also taught me so much about life, my values and principles, and how I treat others. It’s taught me to look after my body more. I eat carefully and generally take more care of myself. It’s also brought my family together and led me to meet an amazing man with a heart of gold. The community I have around me is generally really supportive and I’ve never felt this loved before.

WHAT DO YOU DO TO STAY POSITIVE?

I have a strong faith in God and holding on to his promises keeps me positive and full of hope. I have trained my mind to turn all negative thoughts into positive ones. It works because although life sometimes feels harsh and unfair, I also know that I am very blessed to be here.

WHAT WOULD YOU SAY TO OTHERS WHO ARE FIGHTING CHRONIC ILLNESS?

To all my fellow chronically ill out there I would say: I know it’s hard. I know. And it’s okay not to feel strong at all times. It’s okay to break down if that’s what you need as long as you get back up again. I admire the way you’re handling this and I know you can do it. We can all do it. Strength comes from within and we obviously have it because we’ve made it this far. One day a time, deep breaths, little smiles, and tons of self love. It’s gonna be okay.