My name is Imali, I’m 24, a business owner/blogger and I live with a host of complex chronic health conditions — including ulcerative colitis, enteropathic arthritis, hypermobile Ehlers-Danlos Syndrome, and currently, steroid-induced Cushing’s Syndrome.

I’ve been in and out of hospital since an early age, experiencing extreme fatigue, joint pain, and recurring infections. Like many with chronic illness, my journey has been anything but straightforward.

After developing particularly severe symptoms of inflammatory bowel disease in my early twenties, I was eventually diagnosed with ulcerative colitis. Despite trying multiple medications, things escalated, and in 2024 my bowel perforated. I developed life-threatening sepsis and needed emergency stoma surgery to save my life.

Post-surgery, the hope was that things would settle down, but within three months it was found that I had developed enteropathic arthritis — a type of inflammatory arthritis linked to IBD — followed closely by uveitis in my eyes. To manage the extreme inflammation I had everywhere, I was placed on a high dose of oral prednisolone steroids. They were meant to be a short-term fix while we figured out other treatment options. Unfortunately, my body has continued to react badly to the multiple alternatives, leaving me currently ‘stuck’ on steroids far longer than anyone expected.

That’s when the signs of steroid-induced Cushing’s Syndrome started to show for me.

After a few months on steroids, I suddenly began to gain weight rapidly, my face and neck became round, my skin bruised easily, and I looked visibly swollen. I had a DEXA scan — which tests for your bone density — and it was found that mine was weakened down one side, a sure sign that the steroids are affecting me.

Although I had been warned of ‘moon-face’, nobody had told me much about Cushing’s Syndrome, and so I didn’t know what to expect. Stuck on the same dose of steroids long-term, the weight just continued to gain, and I also now have the ‘hump’ in my neck, which I have realised is very common.

It wasn’t until reacting to my fourth treatment option that my GP mentioned the potential of Cushing’s Syndrome to me and explained my symptoms — which of course, are textbook. This was really gratifying, because I found that I was struggling to understand how I was gaining so much weight and had such an appetite all the time. You could say it was a relief of sorts. It finally gave a name to the way I was feeling — but it also left me in limbo. I can’t stop taking steroids without risking my mobility or vision, but the longer I stay on them, the more damage they do. It’s a cruel balancing act.

What’s frightening is just how common this situation is. So many people with autoimmune and inflammatory conditions rely on steroids — often for longer than they’d like to — because other treatments aren’t accessible or don’t work. Yet hardly anyone is talking about the long-term risks of that. Steroid-induced Cushing’s Syndrome is under-recognised, under-treated, and incredibly misunderstood.

Even celebrities like Selena Gomez, who has various chronic illnesses, have spoken openly about the effects of steroid treatment. Though she hasn’t confirmed a Cushing’s diagnosis, she’s faced extreme public scrutiny for the visible changes in her appearance — changes that many of us on steroids can relate to. It highlights just how little compassion or understanding there is when it comes to steroid side effects.

Living with Cushing’s on top of everything else is exhausting. I have found that my body is often physically changing quicker than I can mentally keep up with, and my relationship with food is a strange one because what I eat does not correlate to what I see in the mirror. I have also found that people are very quick to make comments about my weight, without any comprehension of the reasons behind it.

I’m currently working with my hospital teams to try and find a medication that I can tolerate so I can safely taper off the steroids. Until then, I’m stuck — and the reality is, so are many others.

Cushing’s Syndrome is not “just weight gain” or “a round face” — it’s a serious condition that needs more attention and understanding. We need more awareness among patients and healthcare professionals alike, especially when steroid use is so common in treating autoimmune disease.