Getting Told You’re Making It All Up

By Kathleen Hoffman, PhD, MSPH

Imagine going to see a doctor when you’re exhausted and enduring multiple kinds of pain, and they recommend a “psych” evaluation. When they “can’t find anything,” the medical professional you looked to for help decides you must be making it up. Many patients with conditions that mimic other disorders describe facing this challenge.

Systemic Lupus Erythematosus (SLE or lupus) is one such condition. Members of the LupusConnect Support Community on Inspire describe going through Herculean efforts to find help, only to be disbelieved, or, at best, having their diagnosis delayed. One member explained,

“For about 10 years I would complain to my former primary doc that I have ..debilitating fatigue, nausea, headache, body pain etc and that I noticed it would usually happen after a stressful time. She would check for Lymes and thyroid which were always negative. She did this 5 years in a row and then decided I had Fibromyalgia.”

Only with the proper blood work, seeking treatment from rheumatologists or from skin biopsies done of the butterfly rash by dermatologists, do people get a diagnosis. But by then many members describe sometimes multi-year ordeals trying to find someone that takes the honest description of their daily experience seriously.

Many even have to deal with their loved ones’ skepticism. A family member decides the fatigue and other lupus symptoms that they experience are “mental,” or as one Inspire member wrote;

“my husband does not understand the…pain, fatigue, and struggle that comes with this awful disease.”

They also struggle with friends and community judgement.

“a friend said I was lazy because of lupus…When are people going to stop judging us? Over something that is Beyond our control.”

Lupus is an autoimmune disease which can progress to serious involvement of several organs. Fifty percent of people with lupus experience kidney inflammation called lupus nephritis which can lead to kidney failure. The brain and the nervous system can be affected by lupus causing dizziness, headaches, strokes and seizures as well as behavioral changes and impaired speech. Involvement of the heart, lungs and blood vessels can result in pericarditis, inflammation of the chest cavity and heart muscle causing heart attacks. Bleeding into the lungs, pneumonia and anemia can occur. People can die from this condition.12

Over 32,000 Inspire members have indicated an interest in lupus, searched for information on lupus or posted about lupus on Inspire. Among those are the over 9000 members that have joined the LupusConnect Support Community on Inspire. Eighty-three percent of Inspire’s LupusConnect Support Community members are female.

Members ask for advice on treatment, “Are you on any medicine to help with pain control?” or “Contemplating Plaquenil,” name brands, and suggest asking for medication from their rheumatologist.

And they are grateful for support,

“Im so glad I found this online community.Thats why I joined here. I didnt want to feel alone anymore…. I know Im not the only one…sometimes its easier when you can connect with others who understand- truly understand- what this awful disease does to us.”

Believing people is a first and vital step to truly helping them. As people living with chronic illness–(definition of a patient)–they deserve sensitivity, support and caring as they navigate their life-changing and often life-threatening experience.

Download our newest case study about the language of patients dealing with serious conditions, “Avoiding Pitfalls: Using Patient Insights from Social Media for Product Marketing.”

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References:
1Lupus Foundation of America https://www.lupus.org/
2https://www.mayoclinic.org/diseases-conditions/lupus/