Rheumatologists are key members of the lupus treatment team and are often the clinician that will make a lupus diagnosis. But, studies have shown that the primary concerns often differ between lupus patients and their clinicians.
In this edition of the LupusCorner Q&A Forum, Lupus Warriors share what they wish their clinicians understood about the challenges of life with lupus.
Anonymous
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.
Sandeegirl1961
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.
Jasrene
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.
Diana G.
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.
Cathy
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.
Judy B.
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
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The first time my doctor saw me, he said”I thought you’d be really sick. ” That hurt! I wouldn’t waste my time of I didn’t need his help!
My Rheumatologist is good but when it comes to understanding he just says you have Lupus and Sjogrens and have to learn to live with it while that is true, it is frustrating.
The first day I took Plaquenil, I had a severe Catatonia episode. (I had no idea what Catatonia was.) My mother called my rheumatologist to ask if this episode could be a reaction to the medicine. The doctor kept declaring it couldn’t be, but not once did she connect the ‘slowed down, unable to move or speak’ episode as a symptom associated with lupus! I had recently been diagnosed with lupus so you would think the episode as described would have triggered some connecting of dots that this was a serious Lupus associated situation. Her comment was that “if she’s having some medical situation, you should take her to the ER.” Why, yes, thank you. SMH