Video: Living with Autoimmune Diseases

Below is a video from the YouTube channel Our Grandfather Story (OGS), which raises awareness about overlooked stories across Southeast Asia. In this video, OGS interviews people with autoimmune diseases to ask them questions like, “Are you really sick?” “Can you be cured?” and “Should I pity you?” I found the video to be very relatable, especially as someone with an invisible illness, and I liked how they talked about some of the mental health impacts of chronic illness as well.

The participants in the video live with the following conditions: myasthenia gravis (MG), primary sclerosing cholangitis, autoimmune hepatitis, ulcerative colitis, autoimmune encephalitis, and lupus nephritis.

Thank you to OGS for raising awareness about autoimmune diseases; I hope my readers enjoy the video as much as I did!

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What is Spoon Theory?

The term ‘spoon theory’ was coined by Long Island, New York based blogger Christine Miserandino, a chronic illness advocate living with systemic lupus erythmatosus (SLE). The theory states that those with chronic illness only have so many ‘spoons’, or units of energy, available to them in order to accomplish their daily tasks. This is in contrast to healthy, able-bodied individuals, who have a much greater supply of ‘spoons’ that allow them to achieve all that they need to get done throughout the day.

Christine first created the term after she tried explaining to a friend what it was like to live with the autoimmune disease lupus. After having some difficulty explaining how she lived with chronic pain, chronic fatigue, and challenging symptoms, she realized that it would be easier to explain her disease if she had a visual aid. This is when she handed her friend 12 spoons to represent units of energy, and took each spoon away as her friend described every activity that she had to do throughout the day, including routine items like doing the groceries, cooking a meal, showering, and even getting out of bed. Her friend quickly realized that she didn’t have enough spoons to complete all the necessary tasks in her daily life, and had to make difficult choices, like whether to eat dinner or run an errand instead.

Christine later decided to write a post on her blog But You Don’t Look Sick, to describe her interaction with her friend and the creation of the ‘spoon theory’. This also lead to the development of the term ‘spoonie’, to describe someone with a chronic illness who has to make difficult choices throughout their daily lives on what they will and won’t be able to do.

I think that spoon theory is an excellent way to describe what it’s like to live with an autoimmune disease to any healthy, able-bodied person who may not otherwise understand what you’re going through. This is especially true if you have an invisible illness (when you don’t have any obvious outward symptoms), and others perceive you as lazy, inconsistent, or having poor time management skills.

One of the most difficult aspects of having limited ‘spoons’ is that some friends or family members may not understand why you can’t do certain things, like go out for a fun night on the town on a Friday after work, or why you can’t run a 5k with them, or be a bridesmaid at their week-long destination wedding. These are tough decisions that any spoonie or autoimmune warrior has to make, but, they’re just part of the reality of living with a chronic illness.

On a more positive note, sometimes, have limited ‘spoons’ does force us to choose the things that really matter in life. Maybe you don’t want to go to your Great Aunt’s potluck, but if you were perfectly healthy, you would have begrudgingly gone, just to be nice. But when you live with chronic pain, fatigue and other symptoms, you don’t have the luxury of being a ‘yes-man’ (or woman). You have to decide what is worth your time and what isn’t.

This sentiment was echoed by Estrella Bibbey in the video, Sjogren’s Syndrome: A Place to Begin, when describing her life with Sjogren’s Syndrome. “This kind of illness makes you slow down, it makes you choose wisely, and it makes you want to conserve your energy for the very best things,” she said. “I don’t live my life just willy-nilly, [like] we’re going to do whatever and just pick up the pieces later. It’s a more controlled experience, but we choose the really good things and we make sure our energies are focused on the really good events. When we commit to going to a birthday party, or some other kind of social event, we commit to it and we are really excited to be there, and we made a space in our lives to be there.”

If you’re a spoonie (like me) and I had to give you one piece of advice, I would say to practice self-care, be kind to yourself, and make sure you’re using your limited spoons wisely.

What do you think of the term ‘spoon theory’? Does it accurately describe your life as an autoimmune warrior? Have you ever had to make a difficult decision about using your ‘spoons’? Comment below and let me know!

April is Sjogren’s Awareness Month; Read My Story

Hello Autoimmune Warriors! I hope you’ve all had a great start to April, despite the coronavirus pandemic that we all find ourselves in. April is actually Sjogren’s Syndrome awareness month, and as such, I wanted to share my own story battling this autoimmune disease here on the blog as well as on social media.

Name: Isabel

Current age: 27

Age when diagnosed: 20

City/State: San Diego, California

Please finish with the following sentence: “Since I was diagnosed with Sjögren’s, I have learned…”

…that self-care is extremely important when you have a chronic illness. After I was first diagnosed, I continued to push myself physically, academically and professionally the way I would have pre-diagnosis. But it’s really important to listen to your body and take it easy sometimes, even if that means it will take longer to accomplish your goals.

What are your most difficult symptoms?

Right now, joint pain, particularly in my hands, is my most challenging symptom. However, eye and mouth dryness, fatigue, and brain fog have been difficult for me as well.

How has Sjögren’s affected your life and how have you been able to effectively cope with the complexity of symptoms?

It takes me longer to accomplish tasks than it did before, due to chronic pain and fatigue. I have to go to the dentist a lot to take care of my oral hygiene, and I see different specialists for each of my symptoms. I also take various medications to cope with symptoms like dryness and joint pain. Other than taking medications, I cope with the symptoms by connecting with others living with the disease on social media and through my blog, autoimmunewarrior.org.

What do you wish people knew about your Sjögren’s?

It’s not just dry eyes and mouth, and even those symptoms can be debilitating if they’re severe enough. This disease involves the whole body, and it’s a lot more than just a small ‘nuisance’, which is what it’s often portrayed to be.

Given recent global events amid the coronavirus/COVID-19, do you have any specific concerns because of Sjögren’s? 

As part of my treatment plan, I take immunosuppressant medication, which I’m afraid puts me at greater risk of not being able to fight off an infection, like COVID-19, if I were to catch it.

What’s your best Sjögren’s tip?

Find a team of medical professionals, including a rheumatologist and dentist, who are knowledgeable about Sjogren’s and have experience treating this disease specifically. Unfortunately, based on personal experience, I’ve found that few medical professionals are truly educated about the impact that Sjogren’s has on patients, so it’s important to connect with those that really understand the complexity of the disease and how it manifests.

Thank you for reading my story! If you’d like to learn more about how I was diagnosed with Sjogren’s, please visit the following article: My Struggle with Autoimmunity: Part 1.

If you’d like to share your own story, please visit the This Is Sjogren’s webpage on the Sjogren’s Foundation website to learn how you can be a part of the #ThisIsSjogrens awareness campaign.