I Wish That My Rheumatologist Understood…

My rheumatologist understands the challenges of living with lupus 3/5 (neutral) What do you wish that your rheumatologist understood better about life with lupus? Lupus is more diverse than textbooks and training suggest. Its manifestations are affected and tweaked by individual genetics, environment, health levels, diet, geography, stress levels, reactions to meds and so much more. If a patient’s rash or symptoms seem minor or atypical – especially when you’re treating others who are dying of lupus – announcing point blank “it’s not lupus” or “lupus hasn’t caused that” can crush vulnerable individuals, put some at risk, and destroy efficient working relationships if/when they worsen or results prove otherwise. Many of them KNOW it’s related. Many of them turn out to be dead right. You can look arrogant and uninformed – even a danger to them…and the extent of information exchanged (about lupus and ineffective or unethical practitioners) between patients countrywide and worldwide is vast. Some patients need treatment for the trauma their practitioners cause. It’s really OK to just say “I don’t know. Let’s check.” Please preserve your credibility, your reputation and your compassion. We understand you’re tired, stretched and under-resourced, but we need you. Desperately. Please, just look again, reconsider. Think outside the box. We may be the next patients dying in your clinic.

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