Video Vignettes: Through Their Own Eyes: Autoimmune Diseases

The Autoimmune Diseases Support Community on Inspire created over 25,000 posts this past year. One of the over 21,000 members shared her experience with the community in a video.

According to the NIH, there are over 80 diseases caused by the immune system attacking the body.1 Some of the more common include type 1 diabetes, lupus, inflammatory bowel diseases, celiac disease, psoriasis, multiple sclerosis and rheumatoid arthritis. Symptoms that first appear – like fever, fatigue and muscle aches – describe a number of ailments. Getting a diagnosis can be frustratingly long as the member below describes:

“I feel I’ll never get a diagnosis, it has been 10 years…I wonder if what I have is just too rare…. I deal with frustration and depression just from not knowing what is wrong. I read and research on a regular basis and document all of my symptoms along with photos, have changed doctors numerous times, I go to counseling and know my problems aren’t in my head…I just don’t know what else to do. How many people go this long before a diagnosis?…I have had to just suffer being a disabled person with no explanation for too long….”

Autoimmune diseases often cycle, flaring and then going into remission. Many of those suffering from an autoimmune disease “don’t look sick.” Many people experience stigma because of their invisible disease. For example, one member wrote:

“I just needed to take a minute to talk about this with people that understand. Sometimes I have to call in sick to work due to a flare up, especially the day after my infusions. It’s frustrating because I feel like my boss and co-workers think I make up excuses. From looking at me, I do not look sick. I look perfectly healthy….Normally at work I am very upbeat and outgoing and so I think when I call in they all think I’m making it up. Does anyone else feel this way?”

Another member agreed:

“I also get funny looks and behind the hand comments, but I work as hard or harder than my coworkers on good days and stopped worrying what they think on bad ones. They have no idea how it feels to be me.”

In a similar online discussion, a member disclosed that she had been asked to leave a job because of the amount of time she had had to take due to illness. Other members provided guidance.

“I do not believe they can ask you to leave due to a medical condition. You are protected by laws that regulate that.…You are not required to disclose an illness before getting a job so don’t feel like you need to.”

Causes of autoimmune conditions

Research is being done to identify the causes of autoimmune diseases.  A recent study in Nature Genetics by NIH researchers has linked the Epstein Barr virus with several autoimmune diseases. They have found the viral EBV protein activates genes associated with autoimmune diseases like multiple sclerosis, celiac disease, rheumatoid arthritis and type 1 diabetes.2

There are treatments but cures of these conditions are still to be found. For people experiencing gastroparesis, a condition that slows or stops stomach motility and causes it to not empty properly, treatments are limited. A teenager wrote:

“Well I was fed up today and just wanted to eat. I am so tired of gastroparesis ruling my life and I had a medium coffee and cookie and a cup of ice cream all at once. I ate it around 11 and it’s now 11 the next day and I’m 6 months pregnant-looking, in so much pain and I can’t breathe. Will someone help me get through this ideas to help it get out of my system faster?”

A member responded:

“I’m struggling with the same mental and emotional impulses…It’s incredibly difficult, losing control of your bodily functions….It’s …psychologically challenging to come to terms with the fact that life can still be beautiful, in spite of the way that this disease can and will, change your life….I…recently went through a bout of ‘rebellion’, against my stomach…I got tired of…my body taking twelve hours to digest some toast and water. So, I said the heck with it, I’m going to have a bowl of cereal…the size that I use to have!! …not a very smart move on my part…but…I just wanted to feel “normal” again…Well…I spent the next day in pain, feverish, and vomiting….What you did was very human….our craving for food, is biologically ingrained…essential to our survival. Kinda hard to change our way of thinking about something so significant to us.”

Another member with gastroparesis discussed the stigma and misunderstanding that they face:

“I often wonder if I went out, looking how I actually feel, if people would have at least a little empathy. I almost shaved my head once…seriously…because my family treats me like i am a hypochondriac who should just eat because ‘you feel bad anyway’… there is no understanding for GP-ers. People just don’t want to wrap their heads around it. It makes them uncomfortable and contributes to our sense of loneliness.”

And a member expressed a strategy that they use to cope.

“Compassion is such a dire commodity in this day and age. I see a lot of it on these Inspire pages; and it’s truly a lovely facet of human suffering. Oftentimes it seems that when we are suffering ourselves, that’s when we’re sincerely able to identify with another’s suffering. I believe there’s a profound lesson in this. ‘Walking in another’s shoes’ (so to speak)….Living life with this condition isn’t easy…There’s certainly days when I feel tired of it all; and I haven’t been dealing with nearly as long as some. But…if you can just find one person, or one thing even in the course of your day to give you hope, make you smile, or forget for a moment in time how sick you feel -then (on some level) you’re still winning the game.”

Life with an autoimmune disease, especially if it is an invisible disease, is a struggle that is eloquently described in the posts between members of this community. To learn more from patient stories, take a look at the Experts by Experience compilation eBooks from 2014 through 2017.


See our eBook “Experts by Experience 2017”

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