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.

My rheumatologist understands the challenges of living with lupus

5/5 (strongly agree)

What do you wish that your rheumatologist understood better about life with lupus?

My rheumatologist keeps me off the ledge. He is excellent. If I tell him where I hurt during my visits, he knows exactly what physical activity to recommend. I am lucky.

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?

The challenge is being seen as very normal but actually we are really very tired. Especially on days where we just doesn’t feel like getting out of bed.

My rheumatologist understands the challenges of living with lupus

4/5 (agree)

What do you wish that your rheumatologist understood better about life with lupus?

I have just begun seeing a new rheumatologist, one who discussed with me medications, non-prescription coping methods, and possible future therapies. I hope that he understands how difficult it is to juggle the demands that other medical conditions make alongside the demands of dealing with lupus.

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?

While she is attentive, I feel that because my symptoms aren’t always severe she doesn’t think it’s that big of a deal or that it doesn’t affect me that much.

My rheumatologist understands the challenges of living with lupus

4/5 (agree)

What do you wish that your rheumatologist understood better about life with lupus?

A lot of the different symptoms & issues he says are not associated with lupus. Yet other lupus people say differently