016: Sarah Belclaire on Drug-Induced Lupus and Cardiomyopathy

Sarah Belclaire is an art librarian, fine art photographer, writer, and researcher based in Boston. Believe it or not, she and Lauren connected over email when Uninvisible first launched…because, like our first guest Mercedes Yvette, Sarah had lupus! Let’s explain the use of past tense here…Sarah lived with drug-induced lupus for two years – a reaction to medication she was prescribed for a GI issue (and one that was later diagnosed as only a food sensitivity – and cured with diet change). While her lupus has since passed, she lives daily with the long-term side effects of its presence: in the form of dilated cardiomyopathy. In addition, she has a tendency toward chronic migraines bought on by the long-term use of oral birth control. Sarah has had to make a number of adjustments in her daily life as she lives with heart disease, and her avenue to advocacy has been to document her healing from surgery to implant an internal defibrillator. Through photographs in a series called Unmending, Sarah beautifully illustrates the light and shadow of invisible illness – and inspires us all to remember that the only way out is through.

Join us as Sarah shares… 

- that she first got sick about a decade ago, when she was on medication for a GI issue that caused drug-induced lupus 

- that drug-induced lupus was so much more damaging to her health than the original GI issue 

- her surprise (and Lauren’s!) that a medication with such wide-reaching and devastating side effects was a) still prescribed, and b) not monitored closely enough to prevent the worsening of side effects 

- how the side effects of the drug manifested: fluid in her lungs, swelling, protein urea (which affected her kidneys), an enlarged heart, and irregular heartbeat (dilated cardiomyopathy); but luckily – NO nervous system damage 

- that her GI issues were ultimately related to food sensitivity, and were solved with a total diet change – no medications required 

- that she also suffers from chronic migraines – which are related to her long-term use of oral birth control 

- that her recovery from drug-induced lupus took 2 years 

- that she suspects her cardiomyopathy was caused by her drug-induced lupus, even if doctors haven’t yet confirmed this hypothesis 

- that she sought legal counsel when she was diagnosed with cardiomyopathy, but was questioned as to why she waited so long to report the issue (hint: she was healing and being diagnosed!) 

- that she ultimately didn’t pursue legal action against the drug company or against her doctors for malpractice, because it would have been very stressful for her to continually relive the trauma of her illness 

- how she manages her conditions in the workplace 

- that she has to exercise to keep her heart healthy, but she also can’t overdo it – it’s a delicate balance because of her heart issue 

- that there is a possibility she may need a heart transplant in the future; her emotional reaction strategy is to live in the moment as much as she can 

- that she has had an internal defibrillator implanted 

- that she has documented her surgical scarring (as a tool for recovery) in a fine art photography series called Unmending; this experience helped her normalize the healing process because it allowed her not only to express herself, but to return to a comfortable (and comforting) working medium 

- that she’s been fortunate to find a wonderful medical team at Mass General hospital 

- that there is not a culture of compassion in the workplace, but she’s been fortunate to have support for her conditions at work 

- which advocates in the invisible illness world inspire her 

- the need for greater community-building – and access to these communities – in the invisible illness world 

- how she stays active and motivated to exercise 

This is a public episode. If you’d like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com/subscribe