Living With Chronic Illness, Without Medication
Updated: Mar 9
This blog post is about my Mum. She’s the strongest woman I know, and I want to share with you her journey with chronic illness.
Mum was diagnosed with Scleroderma five years ago, which was triggered by a major stressful event in her life. Scleroderma is a very rare autoimmune disease which affects the connective tissue. It involves gradual thickening and hardening of connective tissue due to build up of collagen, including the skin, joints, lungs, digestive tract, kidneys and esophagus.
Mum was referred to a rheumatologist who put her on the standard treatment for rheumatoid autoimmune diseases: disease modifying antirheumatic drugs (DMAD) and steroids. The DMADs are similar to low dose chemotherapy and have similar side effects. The main being nausea and diarrhea. Other side effect include hair loss, fatigue, liver damage and increased infection risk. It also interferes with folic acid, resulting in ulcers if you don’t supplement it. DMADs are generally taken once per week to control the disease, so for 1-2 days per week you’re likely to experience debilitating side effects.
Mum followed the drug protocol, while simultaneously changing her diet. Around the same time, I had discovered the Paleo diet which I was using to help fix my own digestive issues, and this lead us to the Autoimmune Protocol (AIP). This diet involves removing all inflammatory foods including grains, legumes, nightshades, nuts, eggs and dairy which helps to heal the gut lining and stop the autoimmune response.
After persevering with the diet and drugs for several months, it was clear things were not getting better and the side effects from the drugs were worse than the disease itself. Mum decided to come off the drugs and just try the diet alone.
It was this one, single, courageous decision that I think will change her path forever. It’s not easy going against what highly qualified doctors recommend, to trust your instincts and go with what feels right. It’s a lonely path, one full of uncertainty. But I 100% believe it is the path that will lead to a longer, happier, healthier life for my Mum.
Since then, Mum has continually worked on her diet and lifestyle, spending hours every weekend sourcing and cooking food that will nourish and fuel her, instead of causing inflammation, the main driver of disease itself. She had worked on improving her sleep, better managing stress levels, and healing from hurt in the past.
Although her disease has somewhat progressed over the years, a recent event really highlighted just how significant her efforts to change her diet and lifestyle have been. Mum came across a Scleroderma support group on Facebook and went along to a meet up they were having. Out of the group of 10 people, she was the only person to not be taking drugs for the disease. Many of the group were unable to work and had various disabilities due to the disease progression. Mum just started a new job and career pathway at age 59. She truly is amazing.