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Autoimmune diseases occur when the immune system attacks the body’s own healthy cells. There are over 80 known autoimmune diseases and counting, affecting more than 14 million Americans.
Find national and international organizations focused on specific autoimmune diseases, from alopecia areata to vitiligo.
Information, health-related articles, and resources to help you navigate living well with autoimmune disease.
TIPS FOR STAYING WELL
Managing Mental Health with Autoimmune Disease
Living with chronic illness takes a toll emotionally and socially. How can we take care of our mental health?
Browse our resource lists and information via the links below.
Find Medical Institutions Focused on Your Autoimmune Disease
An extensive list of centers, clinics, and hospitals across the United States that specialize in diagnosing and treating various autoimmune diseases.
We support autoimmune disease education and research by funding grants for scientific investigations, holding live talks with experts, and partnering with the Celiac Disease Program to create educational resources.
Comprehensive Educational Resources for Those Living with Celiac Disease
Our celiac-focused resources are a product of GAI’s partnership with the Celiac Disease Program at Children’s National Hospital in Washington, D.C. Visit our Celiac Education page to find information on Gluten Free Education Day, expert celiac talks, podcasts, a gluten-free diet app, and cooking and nutrition videos.
Join Us for Our Next Autoimmune Support Group, July 31st, 10-11:30am PT
Our aim is to help each other live well and feel heard, while not letting disease define us. We encourage members to come as they are, with an open mind and the willingness to nurture a positive atmosphere.
The Global Autoimmune Institute is empowering solutions in the diagnosis and treatment of autoimmune disease (AD) through research, education, and community, while supporting multidisciplinary approaches to wellness.
GAI Featured in Nature Outlook, July Issue
Learn more about the Global Autoimmune Institute as we explain our work, autoimmune risk factors, and research advances in our Nature sponsor feature!
Home » Articles » Chronic Illness: When You Feel Like Giving Up
When your chronic illness has put you through the wringer in terms of doctor and hospital visits, lab tests, imaging, medications, and other treatments, it’s only natural to feel defeated.
All of us have been there at some point – when you almost want to throw your hands in the air and let the quicksand pull you under. I’ve been there, and spent years attempting to manage the symptoms on my own while getting sicker and sicker. I was grieving for the health I used to have, unsure of what to do.
When you start challenging what you know, new worlds will open up.
It’s an odd mental space to be in – hoping you’ll suddenly get better, while either pretending nothing is wrong or deciding your life is over and you’ll die young. Just remember that:
You don’t know everything.
No matter what challenges you’ve experienced in your illness, there is always something out there – a community, a practitioner, a therapy – that has not been tapped into yet.
How you perceive your situation is a direct result of what you know. When you start challenging what you know, and asking why and how at every intersection, new worlds will open up.
You are not alone.
Whether you’re running the diagnosis marathon or trying to juggle a complex set of symptoms, there is a community of others out there whose situations parallel yours.
We all feel alone, but we can either experience this loneliness in isolation, or in unity; it’s a matter of accessing those connections.
You can accept your current situation without giving up.
Accepting is allowing yourself to be where you are, even if that place is dark: This is how I feel, and I’m dealing with it the best I can. When you’re not craving the life you used to have, or resigning yourself to a future of pain and discomfort, you’ll be better able to take small steps forward.
1. Find joy.
It can seem impossible to remember what it’s like to feel good. And besides the pain and other debilitating issues, you’re under constant pressure by the world around you (and yourself) to get better.
The stress of being sick in and of itself is enough to keep you down. But you can move your mind into a more positive space. Weaving these practices into your daily life can regenerate a sense of hope and peace.
2. Keep a symptom journal.
This powerful tool can help you recognize patterns in your health. When you have a flare, or any kind of reaction or fluctuation in your health, write it down and answer these questions:
How do you feel?
When did it start?
Where were you?
What were you doing?
Maybe you just had dinner at a restaurant. Or you were in a building where harsh chemicals were being used. Or you recently got in a bad fight with your mom. You know yourself the best, and will be able to gauge what to include.
As in other areas of life, there is a delicate balance to keep in mind. Logging every symptom in real time could turn from helpful to hyper-vigilant. Record the food reactions, the nausea, the joint pain, the moments of brain fog, but without judging them as good or bad, and without fixating on them. You’re simply observing how you feel and what’s happening in your body in order to take an active role in your own healing.
3. Partner up.
Go to social media sites and search for autoimmune disease groups. Instead of only interacting with the entire group’s page, try reaching out to someone privately and connecting one-on-one.
Look for patients with similar conditions who may live in different areas of the country or the world, and who can offer a fresh perspective. Set up weekly check-ins to share experiences and suggestions.
Where to start:
4. Share your story.
You will get answers in the most unexpected places. Connect with people you meet in person, post in social media, or ask questions in forums. An acquaintance from work or the person next to you at a coffee shop could have a similar experience, and be able to offer some new ideas.
Countless people are walking around looking healthy when they’re actually chronically ill, or when they’ve dealt with challenging medical situations in the past. If you don’t engage with them, you’ll never know.
Sharing even a piece of your story can be tough, and sometimes you won’t feel comfortable doing it. Allow yourself some grace, but don’t forget to give yourself a sense of agency and recognize the power of your voice.
If you’d like to share your story with the Global Autoimmune Institute, head over to our Get Involved page. There you’ll find prompts to help get you started (they’re also great for journaling on your own). We’re collecting personal stories to put up on our website and social media, bolstering the conversation on autoimmune disease and chronic illness.
5. Alter the inner dialogue.
The way you talk to yourself has a profound effect on the way you interpret and react to tough situations. Positive self-talk can help you cultivate and sustain a sense of control over your emotions and beliefs about yourself.
Recognize when you use phrases like “I can’t” or “I have to”. Also notice when you call yourself names or respond to a situation with, “Why did I do that?” Instead, try, “That happened. It’s in the past. Next time I’ll try something different.” Practice showing love to yourself by reversing the negative to the positive, and by changing the words you use in response to challenging situations.
P.S. It’s ok to feel angry, frustrated, and disappointed – we have all been there! The point is not to suppress negative emotions, but to promote more positive beliefs about yourself by simply observing and then reframing. For instance, we have a tendency to say things like “I am angry” instead of “I feel angry”. The first one promotes a sense of permanency, as if anger is a part of who we are. The second one is more accurate, because what we feel is ever-changing, and the anger present in that moment will soon dissolve as if it had never existed.
If you welcome any of these practices into your life, remember to be kind to yourself and also reach out to others. An accountability partner could be the push you need to start a symptom journal, or the friendly reminder to practice positive self-talk. It is natural to be so consumed with managing your illness that you forget there are others out there willing to offer guidance, a new perspective, or even just a listening ear.
The micro-communities we build in our own corners of the world are slowly trickling into a thriving movement of autoimmune disease patients, researchers, and doctors. When we share with others, we are joining in a subtle but collaborative effort to heal the world of chronic conditions and to prevent disease in the future.