The struggles of losing weight when you’re chronically ill

Here in the United States, obesity is considered a common chronic illness. The World Health Organization defines it as “abnormal or excessive fat accumulation that presents a risk to health.” While the obesity rate has been declining since peaking in 2022, 37% of American adults were still considered obese in 2025. That number shocked me. But how can someone lose weight when they’re chronically ill or disabled?

I’ve been overweight since I was diagnosed with lupus as a child. Consistent use of corticosteroids to control flare-ups contributed to my weight gain.

After having two kids back to back, running a large business, navigating a painful divorce, and spending up to three hours commuting each day, my weight climbed to 310 pounds.

So, in 2019, I decided it was time to change my lifestyle and began a weight-loss journey. Through exercise and diet, I lost 130 pounds. I hadn’t been under 200 pounds since I was a teenager.

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May 25, 2023 by Shalana Jordan

Weight fluctuations can be a challenging part of life with aHUS

A major setback

But in September 2020, my life was upended once again when I nearly died and spent almost two months in the intensive care unit (ICU). I was suffering from multiorgan failure and the destruction of my red blood cells caused by a rare disease called atypical hemolytic uremic syndrome (aHUS). I also experienced a flare-up of two rare bleeding disorders: immune thrombocytopenia and thrombotic thrombocytopenic purpura. Having all three diseases flare at the same time was even rarer.

I was fighting for my life in the ICU. I needed two to four blood draws daily, dialysis, plasmapheresis, 18 blood transfusions, and, eventually, treatment for aHUS.

While hospitalized, my weight was the least of my concerns. I actually lost 10 pounds while in the ICU. But I didn’t anticipate losing 30% of my muscle mass. Unbeknownst to me at the time, ICU patients can lose 20% of their muscle mass in just 10 days. Even though I was still at a healthy weight, it was evident that I was thinning.

Fast forward to July 2021. I was thankfully off dialysis and had mostly adjusted to my “new normal.” Unfortunately, a lot of my organ damage was permanent, which resulted in a lot of changes. I needed a hysterectomy due to severe uterine damage, and as a high-risk patient, I made sure to spend 12 full weeks recovering from the surgery.

But three months of doing nothing took its toll. I gained back all the weight I’d lost while in the hospital, plus more. By the end of 2021, I was back over 200 pounds. But I’d lost weight before, so I thought it’d be easy to do so again. I quickly learned that was not the case.

How illness can complicate weight loss

To lose weight, I need to move my body. I can eat healthy, consume fewer sodas, and so on, but without movement, I won’t lose a pound. But aHUS had caused nearly two dozen comorbidities, many of which affected me physically. I have severe edema in my lower extremities, uncontrolled hypertension, fatigue, May-Thurner syndrome, osteoarthritis, hypertrophic cardiomyopathy, anemia, and more.

I’ve also needed corticosteroids to control flares of my other diseases. Corticosteroids are known to cause weight gain and a “moon face,” which I’ve developed.

Because I’m only 5 feet tall, the weight gain increased my body mass index to 41.6, putting me in the “obese” range. Recently, I’ve tried everything I can to lose weight — eating in a caloric deficit, taking GLP-1 agonist medications, consuming fewer sugary drinks, increasing my water intake, and doing strength training and yoga. None of it has helped. I actually gained 2 pounds after three months on GLP-1 medications.

My body needs cardio to lose significant weight, but this is impossible with all of my comorbidities. I’m used to being overweight, so this isn’t a vanity issue — the weight gain is affecting my health. I can’t climb stairs without taking a break in the middle of each flight. Walking is harder. There’s more strain on my heart, and my blood pressure is higher.

At this point, I’m not sure what to do. I’ll continue doing light weight training and eating in a caloric deficit until I come up with a new plan. More than a third of adults in our country are dealing with obesity, and many people experience abnormal weight fluctuations, so I don’t feel alone. I hope more options will become available soon.

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.