Everyone’s experience with autoimmune disease is different, but I’ve found that nearly all my clients report dealing with a bit of a roller coaster effect when it comes to their health. There are countless dramatic swings inherent in navigating the autoimmune journey. One week/month/season we experience mental clarity, feeling like our symptoms are well-managed and we’re on the right track, and then, BOOM! Within a day or even an hour things can spiral to a full-blown symptom flare-up where we don’t feel like ourselves and aren’t able to access our “normal” lives.
I work with many of my clients on reframing the idea of “normal”—because the truth is, “normal” for folks with autoimmune disease includes some of these fluctuations as we live our lives. It’s not something you solve once and for all. As stressors, diet, environmental factors, and other life variables shift, so too does our body’s autoimmune response. If you find this frustrating, you are not alone!
It’s common to feel defeated, frustrated, and angry in response to a flare-up, as though you’ve somehow failed yourself. It can be so easy to overthink every aspect of your health in order to figure out what went “wrong”. In today’s post, I want to validate your experience and also give you permission to navigate the ups and downs of your journey in healing in ways that work better for you.
I find that clients who get the most frustrated dealing with serious flare-ups typically fall into one of two categories:
- They are newly diagnosed and still learning how to manage diet, lifestyle, and other factors that influence their symptoms. They feel newly empowered in some ways (it can be so validating to have an actual diagnosis!) and so it’s that much more agonizing to feel like their symptoms are out of control.
- They have been on their path with autoimmune disease longer—sometimes for years—and so flare-ups are extra devastating because they have had long periods of successful management. I commonly hear, “I thought I had this figured out!”
Unresolved symptoms can be the perfect storm for a victim mindset. Let’s explore some ways to regain empowerment, even when you feel like your body has a life of its own. Consider this post a toolbox for those times!
Reconnect to breath.
We know the value of activating the parasympathetic nervous system (remember the rest, digest and heal state!) in healing, and your breath is the best tool (that’s literally right under your nose!) to access that state. It’s so easy during a flare-up to get tunnel vision on scarcity: “there’s not enough time to figure this out, there’s not enough money to see another doctor, I don’t have the knowledge to solve this, I’m never going to be well…”
Tuning in to your breath can allow you to slow down and reconnect with the abundance of what’s available to you in this moment—right now. Connect with the abundance of time, love, healing, hope, wellness, and resources as they exist in the very moment. One step at a time. One breath at a time. Right? We know this works. Slow down and bring it back to NOW–the breath has a way of bringing us home to the moment. Check out this post for more breathing strategies to help you activate your parasympathetic nervous system.
Let your feelings have a voice.
It can be tempting to look for ways to numb or distract ourselves from our emotions during a flare-up. We turn to comfort foods, whether they’re supportive of our physical health or not. We endlessly research, looking for the magical silver bullet, spending hours scrolling online. We try hard to ignore what’s going on, as though our symptoms might go away if we are just stubborn enough. When I have clients stuck in these cycles, I find that they’re often avoiding taking a full, hard look at their situation.
Try taking a quiet moment to sit with your feelings, actually explore the sensation of the feeling in your body. Where do you feel them in your body? Is it a tightness in your throat, a cramping sensation in your belly, heavy chest, or a sweaty feeling in your palms? Imagine on your next inhale that you are sending your breath to that place, with patience. Picture yourself tending to the feelings like you would to a child who was hurt. Let go of all the explanations and really tune into the sensation in your body that’s screaming for attention. Let the sensation exist and be a patient observer. When big feelings and uncomfortable sensations arise for me, I remind myself “this is only energy.” It isn’t as scary as we think when we actually pay attention and experience the raw emotion for what it is.
I tell my clients that it’s like encountering a mountain lion while out on a hike: if you turn and run, the big cat is likely to assume you’re prey and chase you down. Yet if you have the courage to stand and face it, it will turn and scamper off. The same applies to our feelings! If we have the courage to face and work with the things that scare us, we’re able to create the space for our emotions to move and shift.
Choose your story.
When you hear yourself describing your flare-up to others, what are the things you hear yourself saying over and over again? How do you describe your current situation to yourself? Are you sticking to the facts, or trying to enroll others in just how badly you have it right now? And if that’s true—is it possible that the story you are telling is helping to create your current reality?
What if, rather than describing what a bummer your symptoms are, you chose to view them as just information? (Now I know, if you have uncontrolled diarrhea, for example, it’s hard to see it as “just some feedback I’m getting from my body”. But it’s true!) Try this on for size: “I trust that I’m going to figure this out. I’m healing—I’m listening to my body and allowing it to guide me to get better. Everyday I have an opportunity to learn something new about what will support my health.”
Shift from victim to empowerment.
Use your flare up as a chance to focus on and practice ways of being that you’re proud of and will support you. When the chips are down, it’s always an opportunity to live your life better. You have nothing to lose! Find ways to access love when you are afraid, patience when you feel angry, and gratitude when you feel distressed. Believe it or not, I have had clients tell me that autoimmune disease has been a huge gift in helping them to be more present, loving, grateful, and mindful. They have gone from believing they were so uniquely sick that no specialist, no diet, no protocol in the land could possibly help them…to learning the power of the internal journey in their autoimmune wellness.
And remember: you can always leverage the most powerful tool in your healing toolbox—the parasympathetic nervous system. Bring yourself back from stress, anxiety, and panic to a place of curiosity and calm. That’s the place we heal.
I’m curious: how have you dealt with flare-ups in the past? Do you have a tried and true strategy? How has your mindset played a role? Please share in the comments!
I have found that its extremely important to allow myself plenty of quiet time to reflect and tune into my body and feelings. Seeing a therapist who is familiar with chronic illness has been extremely helpful to deal with the emotions that come with flare ups.
Quiet time, YES!!!! It is imperative to be still and be quiet to listen to our internal terrain, isn’t it. It is hard for many of us to prioritize quiet and stillness, because it takes courage to feel the feelings. I’m so happy you found a therapist that is supportive and helpful. What a priceless gift. Thank you for sharing your tips with the community.
Thank you for sharing this great reminder! There have been times of feeling depressed when a flare up happens. I’ve thankfully come to a point where I am able to see it as information and do feel grateful and empowered because I am happy to be able to learn something new that will help myself to feel my best. I also feel like I can be a source of hope and encouragement to others through my journey.
Amazing. Nice work, Rebecca. Doesn’t it feel so much better to see symptoms as information? That helps us stay in power.
Thanks for the reminder to breathe. We are trying to book an air BnB to see Mark and it gets
overwhelming for me to coordinate all the times. I am breathing and just letting it go. Everything will fall into place.
Breathing is so simple, and so easy to forget about. When I connect with my breath it is amazing the abundance I can tap into, the practice for me is to REMEMBER to breathe, surrender, and trust. “Everything will fall into place”–you are exactly right. Thanks for sharing.
Thank you for such an excellent article. Your comments on becoming a syphoning pit, swirling in the toilet bowl of self pity, struck me in my heart. Very well written, which is a double sword perspective, when you are a patient and work in healthcare. I had to use a segment of the text for my cell phone’s screen saver. You are a most gifted writer.
Thank you for your comment and kind words.
Hello Sarah, Thank you for these wise words. I wondered whether those good and bad days were just me and my imagination. Now I know that others share the same feelings and that it is common with autoimmune conditions. I was recently diagnosed with autoimmune hepatitis August 2019 and have felt very much alone. Since autoimmune hepatitis is fairly rare there is very little information on it. Your advice is appreciated.
I have recently learned about Forest Bathing. The Japanese have long used this practice for it’s healing properties. I have been taking walks in the Botanical Gardens three days a week and I believe it has helped me. It may be helpful for others in the autoimmune community. To get the details and background on it, google Forest Bathing.
I’m glad that you can find peace in knowing that your ups and downs are a common (and often maddening) part of autoimmune disease. You are not alone! I love your suggestion of Forest Bathing. I will look that up, and I can imagine that it is a very powerful form of healing. Thank you for sharing.
I’m sort of new to this autoimmune thing so the mental and emotional processing is new. Just writing this shows I’ve processed enough to add this comment! So I’m getting there. I love and agree with your advice on breathing. But, I’m not at a point where calling my symptoms as “just information” instead of a terrible grief-filled loss is possible. Honestly, this sucks. I still can recall the old athletic body, her vibrancy, strength, and vitality as she was stolen by aliens and replaced by a broken, weak, painful one. This memory is difficult to “just call information”. Great for all who do, but it leaves those of us who aren’t able out on some planet. I don’t know if this is self pity, or just calling it honestly as I see it. I also find myself working hard to get “this solved” by working with my doctors to find medical regimen that works, getting insurance approvals, seeing referral to specialty physicians, etc. Hearing about relapses, and I’ve had one, is awareness building and sobering. My best ally in this is to take each day as it comes, face my condition head on with plans, treatments, medical studies. I consider sleep, PT, exercise, and accomplishing things outside of this disease/myself as part of my coping. I set my goals to fine tune the medications, get this under as much control as possible, and return to work. I fail to understand, jealously, that my symptoms are “just information.” Wish I could.
I appreciate your honest reflection about the experience of grief and loss in response to symptoms and the struggle to see symptoms as “just information.” Completely valid, and I’m so grateful you shared your experience. I’m sure others can relate. That process might work for some and that is totally fine if it doesn’t work for you. I admire that you are honoring where you are and being honest with what resonates and doesn’t. Maybe the “just information” part of the article isn’t where you get your inspiration or support at this time in your journey. I wonder if the section around letting your feelings have a voice, might be more helpful for you at this stage of grief, loss, and frustration with symptoms. As you work with solutions and problem solving and finding specialists and support systems, you can consider practicing courage and vulnerability–listening/paying attention to feelings regarding your symptoms in a way that allows them to have a voice and life cycle–if that makes sense. Really feeling the hard stuff and letting it come and go, so it doesn’t get stuck in the body or show up in your life in unhelpful ways. I find when I let myself feel the big feelings in a raw and honest way, I can then move forward in a more trusting and hopeful light. Let me know if that lands for you and if you want to have a further discussion about how that practice might be able to support you. I admire your honesty and honor your individual journey. I’m rooting for you!
Kari I know your frustration. I am two years in and thought I had it all figured out. Had a major set back right after Thanksgiving. Was so depressed that symptoms continued through New Year. Destroyed my holidays. The sympathetic looks from my family made it so much harder to accept
I’ve got things almost under control now and I do feel empowered now!
Don’t give up
You are a kind and supportive woman. Thank you for sharing your struggles and victories. I sense you are dedicated to your health and quality of life. I’m grateful for your current feelings of empowerment.