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 – at every intersection – 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 – 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 had 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 never existed.
If you take 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. Sometimes we are so consumed with managing our illness that we 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 prevent disease in the future.
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