Like heart disease, diabetes, and many other chronic diseases, autoimmune disease is an invisible disease.
–Any memorable moments while being tested?–
“The most memorable and frustrating time for me was before I was diagnosed with Crohn’s Disease. I was in and out of the ER three times in one weekend because the doctors kept sending me home with the mind set that I was faking it. I was given every test under the sun – endoscopy, colonoscopy, MRI, blood work, cat scan – the list goes on. But every single time the tests came back negative.
[At the hospital] I was constantly being poked and prodded by all different doctors and nurses. Continually being asked if I was happy at school and if everything was OK at home.
It was so frustrating to me that the staff thought I was faking it.
I was in unbearable pain.
I couldn’t even drink water without feeling agonizing discomfort in my stomach. I was on 90 milligrams of morphine and it didn’t even come close to taking away the hell I was experiencing. It was only after the doctor’s gave me a camera study (a last resort) that they found bleeding ulcers in my small intestine.”
“It’s scary to be in pain, but to have the people who are supposed to be healing you not believing you are experiencing that pain makes it infinitely more frightening.”
–What would you like to see more of from your healthcare giver?–
“Less of the standard answer “it’s different for everyone” and more tangible examples.
One of the most frustrating responses that I continually receive when I ask about my symptoms, treatment, diagnosis and outlook is “it’s different for everyone.” Doctors likely view this response as a safe answer, but this answer results in frustration for the patient and the family caregivers.
It leaves me feeling lost.
At times it causes me to lose confidence in my doctors. As a patient, I want to have faith that I am in good hands. I know doctors don’t have all the answers, but I need them to have some. Repeatedly hearing “It’s different for everyone” makes me feel anxious, uncertain, and ultimately frustrated. Doctors need to share what can be learned from a variety of resources — their own patients (while protecting confidentiality, of course), their colleagues, credible sources of information or support available on the Internet, and the growing number of databases that collect patient-reported data.
“Learning about patient experiences will give individuals something to lean on. It will help them feel reassured to know that there are others who are fighting the same battle. It will help them make informed decisions.”
Autoimmune diseases can’t be seen and if a doctor is not aware of them, as Lilly said, they think the patient is faking it. Raising awareness using the power of patient communities is one of the first steps toward combating this invisible disease.
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Edited By: Tiffany Simms