By Tiffany Simms, Bonnie Feldman, and Ellen M Martin
Why are the lonely voices of autoimmune disease so lonely? What compelled us to coin this name? Autoimmune disease is underserved, overlooked, and under-appreciated.
Due to the invisible nature of autoimmune diseases, many of its patients look normal and healthy. This presents a challenge for patients’ social sphere, a struggle when seeing doctors for diagnosis, and a lack of general awareness and knowledge of all autoimmune diseases. Despite the many statistics on autoimmune disease, it’s time to put a voice to the numbers.
We present to you a snippet of our shocking Stanford MedicineX Workshop survey responses. Believe it or not, these are the real experiences and words of the lonely voices of autoimmune disease.
Time is Precious
Autoimmune disease is treated unlike other diseases and cancers, taking an average of 3.5 doctors and 5 years. But what does that really feel like?
“Struggling to regain vitality after 15 years of misdiagnosis and another 5 years of not quite getting all the pieces of the puzzle in place.”
“It took more than 11 years to be diagnosed and once I was diagnosed, it took 3 practitioners before I received adequate treatment. My teenage daughter also went undiagnosed for 2 years and standard practitioners refused to treat her.”
“It took 7 years and more than 13 doctors to get them to even TEST for my autoimmunity. They diagnosed depression, chronic sinusitis, back problems, possible tumors, lazy, etc”
“Took me 5 years and 12 specialists to be diagnosed with celiac and Hashimoto’s. I want the next person to be diagnosed on the first doctor.”
My Immune System Does Not Discriminate
One of the most frustrating reasons time to diagnosis is so long is because of the amount of testing, the lack of testing and listening, and the lack of knowledge in the doctor’s office.
“Care has been inept at best, based ONLY on lab work and not subjective symptoms. When I try to discuss symptoms I am either written off, told I need a referral to psych, or the extra infuriating ‘you just need to lose weight and exercise more.’”
“I struggled with stomach issues, losing hair, gaining weight, losing pigment in my skin, headaches, brain fog, fatigue etc for over a year. I went to many different doctors. One would give me pain medicine for my stomach, one gave me a creme for my skin, one told me to exercise more and so on. No one wanted to find the root cause of these things. They just wanted to treat the symptoms.”
“It should not be a one size fits all approach. Doctors/Healthcare providers do not take or have the time to coordinate care plans. It seems that everyone is doing their best just to put out the fires rather than looking for an underlying cause.”
“The first neurologist I went to see about my MS brushed off my question and concerns about medication and said that it didn’t matter what lifestyle changes I made, MS would cripple me and I would die from it.”
“That each specialty wants to address only the symptoms that fall neatly into their purview. I went through several decades of primary doctors dismissing my symptoms because the tests they chose to run came back ‘normal.’”
My Pain Is Invisible, But I Am Real
Autoimmune disease does not follow the norm. Young people are diagnosed and patients look healthy. One could even say autoimmunity is the hipster of diseases.
“I suffered for 10 years with bone pain and liver area pain – increased LFTs – only to be told for those 10 years that I was depressed and it was like phantom pain.”
“I’ve been told too many times that I was too young to have the symptoms I was having, I was refused proper care and testing for “old people” diseases and disorders. This happened from my 20s on. I’m almost 40 and it happens less now, but it still does happen.”
“My personal experience – I was originally misdiagnosed as being a mental/psychiatric patient and spent almost 3 weeks on the mental floor before finally being moved to the medical floor. It was there they finally tested my spinal fluid and I was diagnosed with anti-nmda receptor autoimmune encephalitis.”
“I was in my early twenties when I began experiencing symptoms, which doctors dismissed as me being a hypochondriac. Even after a specialist asked my PCP to test me for Rheumatoid arthritis, my PCP initially refused because she thought I was too young”
“My biggest frustrations are with providers jumping to common conclusions. Before my diagnosis of Hashimoto’s I was diagnosed with depression and was told that my other issues were just symptoms of the depression.”
“I find it horrifying that I don’t know a single female in my age group that does not have an autoimmune condition of some sort. There is something very wrong with that picture and no one seems to be concerned that illness is the new ‘normal.’”
My Wish Upon A Star
“Treat the body as a whole, not as a series of numbers on a lab report. Recognize that there are aspects of these conditions that are not yet defined and understood, and support research that improves care.”
“I would like the world to see the similarities between autoimmune patients/conditions. We have more in common than most people realize – symptoms, and especially triggers. I hope for better data sharing among institutions that hold autoimmune patient data, so that these trends and insights can become possible.”
“Team of doctors working together to determine diagnosis and best outcome for the patient. To really listen to the patient to be more understanding of our challenges and symptoms.”
“The main thing is to get the providers to believe each other. When you go to a secondary provider they don’t want to believe you have Lupus until they prove it again for themselves. It is a waste of time and money for everyone involved to have to keep re-diagnosing your illness before they can help you with the symptom that is their specialty. They’ve got to communicate and believe each other on the provider level.”
“Seeing autoimmunity as a possibility and making it more of a standard test than one a patient has to BEG for.”
“Consolidated, accurate information would be great… We’re forced to spend endless hours researching to find information to help ourselves.”
“I feel cheated out of so many years of my life, which was completely preventable if I had received the right medical care. I dream of being able to travel, be active with family & friends, and to truly exercise again! Just simply living with joy, drive, and motivation!!”
“My dream is to eradicate autoimmune diseases entirely! They are the hardest to diagnose, treat and they are hard to live with. Your body is attacking itself on the inside, you are at war and beaten down on a regular basis, yet on the outside you look fine, so people have a hard time grasping the battles you entail or the pain you’re in. To get up one day and have a cure and know that I would never have another flare would be miraculous.”
A Bridge In Sight
While science has not caught up, lifestyle modifications through the addition of complementary medicine may be the beginning steps to better autoimmune disease management and prevention.
“I have fought my way back and I am now a ironman triathlete! Still fighting the good fight with my autoimmune though!”
“When I was finally diagnosed with celiac disease at age 42, after suffering a lifetime of pain and “mystery” symptoms, I decided that if it was food that could make me this sick, better food could heal me. And it has. Now at age 48 I’m healthier than I was in my teens and twenties, stronger, more and stamina. I have been diagnosed with psoriasis, Grave’s disease, celiac and very high likelihood of Sjogren’s. Psoriasis and Sjogren’s are currently in remission because of diet alone. Grave’s has been in remission since 2008, shortly before I found out I have celiac. Diet really needs to be the FIRST things doctors suggest to treat autoimmune disease, no matter which one it is.“
Believe it or not, these are the real experiences of the lonely voices of autoimmune disease.
Our survey encompassed all kinds of autoimmune disease, surprisingly their responses showed common challenges and frustrations; diagnosis took too long and in that time they were dehumanized. The current fragmented autoimmune medical system dominated by a variety of specialists is not optimal for early treatment and diagnosis for autoimmune patients.
Could these responses be indicative of a bigger set of issues? Stay tuned and let us know what you think.
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