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Autoimmune Disease Psychology

Living With Autoimmune Disease and Food Allergies

Since the Month of May is Celiac Awareness Month, and the week of May 8 2016 through May 14 2016 is Food Allergy Awareness week, I decided to share, both personally and professionally, about what living with an autoimmune disease and food allergies are like.

While your results may vary, there are aspects of living with a chronic condition (involving the attacking of the body’s tissues from your immune system), and living with severe food allergies, that overlap.

Much of the overlap falls in the realm of psychological and social health, not just physical health. It is here that we become one community, even if our symptoms aren’t exactly the same. Frankly, having an autoimmune disease sucks. So does having one or more food allergies.

And in suffering through the suck, I’ve discovered there is this whole other life out there — and in here (*pointing to brain*). If you know someone who has autoimmune disease and/or serious food allergies, please feel free to share this post with them.

The Challenges of Autoimmune Disease and Food Allergies

After looking at my own journal notes, updates to my doctors, and listening to clients who have an autoimmune disease and/or food allergies, I’ve compiled a few of the most challenging aspects of both conditions:

  1. Easily fatigued. We can fall into an energy “hole” that takes a long time of which to crawl back out. What makes it worse is that your body may not show an observable deficit or disability, so the expectation that you can participate in daily activities is a constant pressure from both yourself and from others.
  2. Often discouraged. When you wake up one morning and realize, “This is the rest of my life,” there are no platitudes or easy solutions that keep away the whispers of discouragement that come with being ill.
  3. Socially isolated. You cannot eat where others eat, travel as care-free as others do, and you may worry about what others think about you. This causes many people with these conditions to withdraw. Friends may decide not to invite you, so they don’t need to deal with your medical condition.
  4. Frequently misunderstood. Well-meaning friends and family read a single article or book about your condition, and suddenly you find yourself on the receiving end of outdated, poorly researched, ill-timed, or flat out wrong advice about your medical condition.
  5. The butt of many jokes on Social Media. Even NASCAR took a swipe at people eat gluten free as a sign of “getting soft”, not a sign of disease, during their Superbowl commercial. Here’s a link to a video a new contact shared on Social Media; she and others found it “hilarious”.  https://youtu.be/Oht9AEq1798 It would be funny, except that some of the jokes are strangely reminiscent of the way disabled people used to be ridiculed for their lifestyle options.
  6. Unaccommodated and hangry. You and a few others might be the only ones who can’t eat a single thing at a company dinner party you are required to attend.
  7. Negatively labeled. Being unable to eat certain foods, or having an autoimmune disease that involves disability, has many negative labels attached. Where would we be without the ADA fighting for the rights of those with disabilities? Many parents with children who have serious food allergies are labeled as paranoid, “control freaks”, or “over protective,” all because they still remember the last time their child was in the ER with swollen eyes, mouths, or airways, fighting for their lives.
  8. Struggling with anxiety or depression regarding health concerns. Not knowing what can happen next with your health can elicit both depressed and anxious feelings. This is true for the person with the condition, as well as their loved ones or caregivers, who may be overwhelmed with responsibilities.
  9. Betrayed by losses of body function, appearance, or cognitive decline (temporary or permanent). Imagine what it feels like to be talking with friends one moment, and then going into a “flare” the next. You can grow angry with yourself for forgetting appointments, not being able to complete a task or even a sentence, and finding that conversations are more difficult to process.
  10. The resented family member. It’s not uncommon to hear how clients with an autoimmune disease or serious food allergies are resented by other family members, either for being frequently ill (and therefore needing more care), or for not living up the expectations and roles laid out for them (i.e. not being the strong son to care for the parents, not being the wife that is able to carry her share of relational tasks and household chores).

And this is just the quick list.

Making the Invisible Visible

I’ve saved the best for last. This is where everyone, even those without autoimmune disease or food allergies, can gain wisdom from those who do.

Much of the experience of living with both autoimmune disease and food allergies is the struggle to describe what it is that we need from day to day, when so much of what we struggle with is invisible.

Things I’ve heard:

“I just thought you dropped a lot of weight because you wanted to, not because you were ill.”

“I thought you looked tired, but it seems like everyone is tired and working hard these days.”

“Oh, I noticed you stopped coming to Happy Hour on Fridays, but I didn’t know it’s because you got sick on the food last time.”

The people who said these things helped me realize how hidden our diseases and conditions can appear. Many of us do not walk with a cane, do not require a wheelchair, and do not have recognizable outward signs of disease, deformity, or loss of limbs. I can’t, and I wouldn’t, expect anyone to become a mind reader.

As I type the last paragraphs of this post, I’m getting ready to ride my bike outside in the beautiful Eastside and Seattle weather.

Author wearing a blue, green, and black bike kit, holding a road bike upside down at shoulder height in front of an elevation sign at the Haleakala Observatory on Maui, HI.
In March 2016, I bike from Pai’ia to the summit of Haleakala, with an elevation gain of over 10,000ft. It was never something I expected to be able to do with CD and food allergies. When we make the invisible visible, there are possibilities that open up. Read more about how people live with these medical conditions.

Part of my routine requires me to prepare my food and hydration strategy to match both the weather demands and the exercise intensity of the day, and unlike my cycling buddies, there will be no stops at Starbucks for a cookie, and no post-ride cheers at the local brew pub.

I am a rolling snack wagon of real food, pureed and mixed in my own kitchen. I wear an ID bracelet that alerts First Responders to medical information, including my autoimmune condition, so if I’m involved in an accident, I don’t receive medication that will further complicate my condition. I can’t always go “all out” when I want to. I have difficulty eating enough nutrient-dense foods on my limited diet to make up for calories burned.

And whether it’s convenient or not, I find ways to make the invisible aspects of my life with Celiac Disease and multiple food allergies visible enough so that I’m healthy. It’s become so much of a passion and mission of mine to help others that I’m launching a website in August 2016. You can check out the “fun blog” version of the launch where it is currently parked, MyAllergyAdvocate.wordpress.com.

I feel tremendously fortunate to be healthy enough to be active, and to have a great team of providers advising me on the best ways to keep on top of my health conditions, including testing of suspected food allergens as new reactions emerge, and the strict avoidance of gluten and several other grains that trigger autoimmune system reactivity.

Testing of autoimmune disease and food allergies can be a long and daunting process, yet learning how to care for yourself or someone with these conditions is worth the hard work.

 

By Imei Hsu

Imei Hsu is a mental health counselor, active retired RN, writer, triathlete and arts promoter in the Seattle area and through online services. With 29+ years in healthcare (20+ years in mental health), Imei has a commitment to helping people discover insight into their health, relationships, and connecting. She is the owner of Seattle Direct Counseling and the blog, a presenter and speaker on a variety of psychological topics, and a positive force on the Internet. She is launched her personal project, My Allergy Advocate, in 2018. Imei is two-time Ironman Finisher (Mont-Tremblant 2016, Ironman Canada 2018), and is currently training for her third Ironman in August 2020; she also finished her first ultramarathon in 2017 and has gone on to race the 100K distance while preparing for two separate 100 Mile trail races in 2020. You can find her running everywhere and eating all the thingz, watching movies, and cooking real food.

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