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How My Appearance Has Changed Due to Lupus

Last updated: April 2023

As we age, it's obvious that our physical appearance changes–it’s part of life. However, I have noticed, particularly within the last 5 years, how my body has changed a lot due to the physical effects of lupus.

Life can be hard with how debilitating lupus is and the way it makes us physically feel, although I wanted to talk about how some of the physical changes in the appearance of our bodies can have an emotional impact on us.

Lupus skin rash

I was surprised a few weeks ago when my 5-year-old daughter asked me what the red marks were on my arm. I was expecting there to be something minor that she had spotted at the top of my arm where she was pointing, but I was shocked when I looked through the mirror, and I could see a very large area of raised red patches at the tops of both arms. I hadn’t noticed these before although admittedly as a busy lupus mum I don’t pay much attention to myself in the mirror these days plus I'm often covered up as It’s wintertime here where I live in England.​​I still have my days where I feel self-conscious about itI have always been quite self-conscious about the way I look, so this made me feel a bit anxious because I know I will want to hide the tops of my arms when the nicer weather comes plus, it’s a new symptom that could mean my lupus isn’t under control as well as I thought.

I also suffer from a red face; I get the classic butterfly rash over my cheeks which people often mistake for me looking well and healthy which can be incredibly frustrating. Many people have commented on my "rosy cheeks." Initially, I would try my best to cover it up by plying myself in concealer and foundation, but these days I'm often too tired to care I still have my days where I feel self-conscious about it.

Weight gain and lupus

Obviously, weight gain can be problematic for us lupus warriors, given the effects of medications such as prednisolone and inactivity due to fatigue and joint/muscle pain. I have been on a real journey with this. When I first got diagnosed with lupus, I lost weight. I was barely eating as I felt nauseous all the time, and I was getting a lot of stomach/bowel issues. It was when I was put on steroids that I started to feel better, although I suddenly developed an appetite for food, and I was constantly hungry. I put a lot of weight on it. It was a double-edged sword as it was so nice to feel better, but I hated looking so bloated and overweight. I then lost some weight, but it tended to go up and down.

I try to eat as healthily as I can, although it can be difficult, especially as I'm an emotional eater too. I also feel it's getting harder to lose weight as I'm getting older.

Swelling and hair loss

Another issue I've struggled with is swelling in my legs and feet. It can be incredibly painful sometimes, but it makes me feel self-conscious if I don’t cover them up. I tend to stick to long dresses and skirts in the summer months as it makes me feel uncomfortable wearing shorts.

Hair loss has also been an issue for me, although this seemed worse at the beginning of my illness. It was tough to begin with, but cutting it to a healthy, manageable length helped a lot.

I’m still learning to accept how my body and appearance have changed due to the effects of lupus. Still, I often have to remind myself that I'm grateful to be here and that I practice gratitude for all the positive blessings in my life, which helps to balance my emotions out.

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