Natalie Sayre

@mindfulnatalie | contributor
Super Contributor
Twenty-something sharing the ups and downs of mindfully navigating life with chronic illness. On instagram (@mindfulnatalie), you can follow my day-to-day of striving to live a life of wellness, while facing the ever-changing landscape of chronic illness.
Natalie Sayre

How Chronic Migraine Impacts My Social Life

I have typed the question, “do I have social anxiety?” into my Google search bar countless times since the start of my journey with chronic pain at 21. Even before then, I dealt with anxiety for years. I often wonder where the dynamic, encompassing ripple effect of chronic illness ends and my anxiety disorder begins. I grew up as an extremely social child. I would spend all week looking forward to the sleepovers and playdates that filled my weekends. My mom famously jokes that the first words out of my mouth as a 2-year-old were, “Where are we going today, Mommy?” My personality was defined by an ever-present “on the go” schedule, so much so, that the dramatic shift in routine brought about by my chronic illness forced me to grapple with developing an almost entirely new social identity. I have had to learn new skills also. The activities, outings, and events I used to schedule and attend without thinking twice about, must now be carefully evaluated as to whether I have the physical and emotional stamina to participate in them. The energetic “output” of socializing is a cost I must continually weigh against the reality of my level of pain. When I consider meeting a friend for coffee, attending a family birthday party, going to the mall with my mom, or going on a walk around the park with my husband, my mind is busy doing mental calculations as to the light, sound, temperature, and noise triggers of the activity and how much bandwidth I have on any given day to tolerate them. When making plans, I am mindful to set up “escape route” options — whether that means asking a host if there is a dark room I can lie down in mid-event, setting up a “rest-nest” in my car, or ensuring that I can leave an event early without it being an issue. The mental prep work before actually engaging in any activity requires me to consider “worst-case scenarios” and set up safety nets wherever possible. As I write these words, I’m alone on Easter Sunday while my husband is out to lunch with his mom and brothers, and I’m hoping that my choice to stay back and rest will allow me to visit with them later without absolutely blowing my pain levels out of the water. Since the group knew that for me, going out to a restaurant would be out of the question, they offered to bring lunch in so we could visit here at home. As much as I would have enjoyed more time with them, I knew that today, I would pay a huge physical “pain price” for such a long period of socializing. Having dealt with elevated migraine pain every day this week, and being forced to reach for my abortive rescue medications nearly daily, I had no choice but to say “No, thank you.”  Although it makes me feel awfully guilty and confused to admit this, when I think about trying to visit later, my stomach sinks with dread. I love my mother-in-law and my husband’s brothers. I love being part of this big family, so having fear about spending time with them is a confusing emotion to hold space for. Anticipatory anxiety or dread are often the emotions that come up for me when I make plans to socialize, even when those plans are with people who I truly love. The hard truth of living with daily, chronic pain is that a lot of the time I spend with people I love, I’m in intense discomfort and pain. Much of the time, I simply do not feel physically up for what I am asking my body to do. Although I do limit my activities when I absolutely cannot push through escalated pain (even when there is sadness in doing so), living my life and spending time with the people I care about means that when I can push through, I often do. When I find myself in a social situation, and I am in pain, it’s easy to forget that everyone I’m spending time with probably isn’t also hiding fear, anxiety, and pain behind their smiles and socializing. It’s easy to forget that this weight that has become such a fixture of my reality isn’t something that everyone else is also carrying. It’s easy to wonder how the people around me seem to be interacting so effortlessly when I’m holding back tears. It’s easy to be hard on myself about my need to take rescue medications to try to quell spiking pain when others seem to be just fine in the same environment. In those moments, it’s easy to wonder what is “wrong” with me for not wanting to socialize. When I go down one of these mental spirals, I eventually catch myself and reality-check some of those thoughts. I remind myself that everyone else isn’t just acting like they feel OK —  that most of the time, they actually do feel OK. I remind myself how normal it is to be anxious about spending time with people when the mere act of doing so is something my brain has learned to perceive as a pain-inducing threat. I remind myself, gently, that holding space for the duality of valuing spending time with the people I cherish and the deep challenge of doing so while managing physical pain is incredibly emotionally taxing. I hope that if you find yourself navigating the confusing terrain of chronic pain too, these words can whisper some reassurance into your experience. I hope they can remind you that what you are attempting to balance is as difficult as it feels. And if you happen to love someone who is living with chronic pain, I hope this peek behind the curtain can bring you a bit more understanding about their struggle.

Natalie Sayre

8 Honest Chronic Illness Holiday Confessions

I am always working on finding the right words to describe my chronic illness experience during the holidays. Chronic illness impacts so many aspects of my life. At times, this can be difficult even for just me to manage — which can make having an honest dialogue with friends and family about my needs feel overwhelming. Over the years, I’ve learned that on the other side of the discomfort I feel when vulnerably sharing the reality of my experience, I often find improved understanding and communication. As I’ve expanded my ability to describe my needs with compassion and clarity, I’ve found my loved ones are enabled to better support me, which has made my relationships feel more authentic. I hope that these holiday edition “chronic illness confessions” can give you new ideas about how to navigate some of these difficult conversations with the important people in your life. Hopefully, they can remind you that you are not alone (in what can often be a lonely, isolating experience), and help you to have a more honest, loving, and kind dialogue with your loved ones. Note: of course, everyone’s experience of chronic illness is different, and if some of these “confessions” don’t ring true in your heart, that’s OK! Take what resonates, and leave what doesn’t. There is no right or wrong way to feel. Now, on to the list! 1. Overwhelming guilt. I am struggling with more guilt than you can imagine about all the ways I’m unable to show up how I used to; it’s so painful to feel like I am letting you down. Please be mindful about giving me a hard time about missing things, because I am already having a hard time within myself about having to do so. 2. It helps when I can hear you validate me. Words of reassurance and understanding are some of the best gifts you can give me this season. Even if I know that you understand my limitations and recognize the pain I’m in, hearing you say it out loud means the world to me. It helps me remember (especially when the voice of my inner critic gets extra noisy), that you understand how difficult this is for me. This time of year especially, I often feel so worried that I am not enough and I am letting everyone down — so when you tell me that isn’t true, it helps more than you know. 3. Canceling plans frequently does not make it any easier. It’s never an easy decision for me to miss holiday events. I know that it’s disappointing when I have to cancel plans at the last minute. But please remember that my “alternative activity” isn’t something “more fun.” When I’m forced to cancel, it is usually because I have to stay home and tend to my physical pain. It’s lonely and never my first choice. I love you and truly wish my body allowed me to do more with you. 4. “Accommodation fatigue” is real — please offer upfront so I don’t have to ask. When I need to ask you to go out of your way to make accommodations so that I can attend a holiday event, I often feel as if I am a burden or am imposing on you. If I am coming to your house, it means so much when you give me unsolicited permission to take a break in an empty room if I should need it. Having a quiet space I can excuse myself to when my pain climbs makes such a difference, and I often feel self-conscious asking for that. 5. Just because I’m smiling, doesn’t mean I’m not in pain. Because of my chronic illness, I have had to learn how to hold space to experience pain and happiness at the same time. Even when I am smiling and laughing, I’m also often experiencing physical pain. I am making a choice to push through the pain, because spending time together is so important to me, but just because I look happy doesn’t mean my pain is gone. Please understand that carrying this duality is challenging. Please don’t make assumptions about how I feel or invalidate my pain just because you cannot see it. 6. I often feel like I’m not doing, or being enough. I love hearing you tell me that you recognize how hard I am trying! I feel so supported when you tell me that you see how hard I am trying. Even as I endeavor to honor my energy reserves and limit my activities, this season’s activities take a toll on my body. I show up because I love you, but a lot of the time doing so requires an incredible amount of effort. When you tell me that you see how hard I am trying, I feel so loved and validated. 7. I often feel so isolated; a short text message from you can be a lifeline for me. Even if we can’t spend much time together physically, it is so special for me when you carve out time to check in with text messages. Sometimes, a simple text conversation feels like my only connection to the outside world. I know you might be busy jumping from one thing to the next this season, but when you take the time to reach out, it means so much to me. Please keep sending them whenever you can! 8. If you want to help, but don’t know what to do, please ask! It is so appreciated. I know that sometimes it’s hard to know how to help me manage my symptoms. When in doubt, please ask! It is incredibly supportive to have you say, “What can I do to make the party easier on you?” or, “Is there anything I can do to help make the day more manageable?” Even something more general like, “I’m not sure what you need to get through the season but I really want to help,” makes me feel less alone. Everyone’s experience of chronic pain is different, and the best forms of support aren’t always obvious or intuitive. Clear communication and open-ended questions can really help navigate this uncertainty. Invisible illness and chronic pain are complex, layered, and dynamic in the ways they impact almost every aspect of life. Be gentle with yourself and your loved ones as you learn how to communicate about the strong emotions chronic pain can evoke, and gradually weave compassion and kindness into your interactions and conversations.

Natalie Sayre

Holiday Dos & Don'ts: When Chronic Illness Forces You to Cancel Plans

Heading into the holidays, my stomach always drops a bit thinking about how vulnerable my chronic illness makes me to needing to make last-minute changes to treasured plans with my loved ones. Over the years, learning how to navigate this situation gracefully —  by extending compassion to both myself and others who are impacted — has been a challenging, yet incredibly worthwhile, process. The extra emotion and nostalgia around the holidays can make canceling plans feel even more difficult than at other times of the year. When heading into a busy season jam-packed with memorable events, it’s disappointing and unfair to not be able to send a memo to my chronic conditions saying things like: “Dearest body, my niece is performing on Saturday in ‘The Nutcracker,’ please cooperate!” or, “I have a big travel day tomorrow, let’s keep the symptoms chill, OK?” In my decade of learning how to navigate chronic illness with less suffering and more compassion, implementing better vocabulary and communication skills when dealing with canceled plans has been pivotal in smoothing some of the inevitable emotional turbulence. It still feels demoralizing to do everything “right” leading up to a big day, and wind up in a pain flare that keeps me from spending precious moments with friends and family. However, the language my loved ones and I have learned to implement when pain does strike helps to soften some of the jagged hurt these scenarios can trigger. Sending you all of my love as we head into this season and hoping that we will all be able to courageously expand our ability to hold pain in one hand and hurt in the other. Remember, we can do hard things with soft, gentle hearts. 1. Do communicate clearly how much you value your relationships. There are many ways to show up as a good friend and family member, and they don’t all require in-person socializing.Several of my close friends have been kind enough to reassure me of this in open, honest conversations where I’ve expressed how my inability to socialize in the way I used to can make me feel like I am “not enough” or lacking as a friend. Little by little, I have been able to begin to embrace and believe what they have told me: that our friendship is not dependent on the number of times we are together, but rather the truth that what truly matters is the quality and depth of our interactions. When you need to cancel plans, it can be tempting to explain how terrible you feel about having to do so. Instead of jumping to shame and self-depreciation, try to use the conversation as an opportunity to express how much you value your relationship. This might look like resisting saying, “I’m the worst, I am so sorry I have to cancel again,” and instead, trying something like, “You mean so much to me and I am so sad to miss out on time together, thank you for being such a source of kindness and understanding in my world.” Mindfully speaking positive reinforcement aloud about how much you value a relationship or friendship, even when you are canceling plans with the person reminds them (and you!) that it is not permanent or an overall reflection of how you feel about them. 2. Don’t over-apologize. As hinted above, today, when my symptoms force me to cancel plans, I am careful to avoid effusive apologizing and the release of a waterfall of “I’m sorrys.” Although I used to open any conversation relating to canceled plans in that way, I’ve intentionally stopped apologizing when symptoms outside of my control limit what I’m able to do. Time and time again, this opens the door for healthier communication between me and my loved ones — and redirection of any misplaced guilt, disappointment, or frustration from me as a person and onto my pain as a symptom. 3. Do set realistic expectations. For several years, I struggled immensely to set realistic expectations about my health. Although I would set lofty expectations with the best intentions, doing so ultimately resulted in creating more pain and frustration around my health limitations. When discussing holidays, special events, or vacations (even when the news you’re delivering is disappointing) try to be honest about what is realistic. By saying these things out loud, It will help you to embody acceptance of these truths within yourself and to be better accepted by others. Another thing I learned in over-committing is that as tempting as it can be to “over-promise” and “hope for the best”, it can create major long-term misconceptions. That can leave others with the wrong impression about the severity of your health conditions and leave you feeling pressure to meet a standard that is out of reach. Some of the boundaries, limits, and expectations I’ve had to set with friends and families have been uncomfortable to bring up, forcing me to confront narratives of guilt, shame, and feeling like I am not enough. As challenging as those thoughts and emotions can be, they’ve also paved the way for a much calmer and authentic existence. Learning this lesson reminds me of the saying: “The only way through is through.” Sometimes, in order to reach deeper levels of acceptance and compassion around your needs and limits, you have to trudge your way through conversations and emotions that feel uncomfortable at first. 4. Don’t sacrifice your well-being to try and “be enough” for others. This is a reminder I need to offer myself constantly, both over the holidays and in general throughout the year. Because canceled plans are something that I have to navigate frequently as a result of living with chronic illness, sometimes it feels like I am walking around with a permanent cloud of guilt hanging over my head. This weight manifests in emotions and thoughts of not being “enough” and shame about my inability to be as present as I would like to be. When I am in a calm, grounded place, I can make decisions that honor my well-being with more ease. However, when guilt spirals are tugging at my ankles, it’s easy to lose perspective and feel like I owe everyone around me my time and energy — even if it results in me paying a physical, spiritual, or emotional toll. At the end of the day, I know I can show up for my family and friends with more love when I am caring for myself in a loving way, and I try to use this truth to gently nudge me toward moving at a pace that actually works for me, even my inner-critic might be whispering to me that I am letting others down in the moment. 5. Do practice self-compassion. You are the only one who can reassure you that honoring your needs and canceling plans is OK and allowed. I’ve had many conversations with my loved ones over the years telling them how much it means to be reassured by them that I am still loved even if I have to cancel plans frequently. However, something that has been just as important has been learning to practice compassionate self-talk, and to let it become a recurring narrative woven into the story of my life. Learning to look at myself and tell myself that I am doing my best, even when it doesn’t look like the version of “best” I would like, has opened the door for a more gentle way of relating to the voice of my inner-critic. Self-compassion is one of the most important ingredients in my personal recipe for well-being and crafting a life well-loved. If self-compassion feels out of reach right now (it did for me at first!), start with acceptance and neutrality, gently wade your way into gratitude, and trust that self-compassion will bloom from all of your hard work. No two souls are exactly the same, no two chronic illness patients are exactly the same and nobody has ever lived your life with your particular set of circumstances; so you are in charge of picking up what helps and leaving behind what doesn’t. I hope the strategies outlined above can help you to enjoy this season with more ease — and as always, take what works and leave what doesn’t!

Natalie Sayre

6 Strategies for Getting Out of Status Migrainosus

Very few things I have experienced are quite as demoralizing and challenging as a migraine cycle that just won’t stop. Currently, I live with the diagnosis of “chronic migraine,” which means that I experience head pain most days and a migraine attack on at least half of the days of every month. As you can imagine, such pervasive pain makes managing the basics of daily living intensely challenging. But occasionally, this baseline level of head pain goes a step further, and I experience a period of weeks (or even months) where my migraine attacks are more severe and persistent than usual. When this happens, migraine pain responds to typical medications and interventions with less and less effectiveness, and my daily focus becomes managing the pain or attempting to keep it from escalating (even more so than during my normal routine). When this happens, the term my neurologist and I use is “migraine cycle” or “migraine flare.” Clinically, this is commonly referred to as “status migrainosus” or “intractable migraine” – defined as an especially severe and long-lasting form of migraine headache, affecting less than 1% of people and lasting longer than 72 hours. An ideal migraine treatment would include preventative treatments that would keep a patient from ever experiencing such a flare. However, for chronic migraine patients who continue to search for an effective prevention plan, these cycles happen; and they are incredibly challenging, difficult to break, and frustrating to manage. Part of what makes a severe migraine cycle so hard is that each one is slightly different, and traditional medications and tools often aren’t enough to cut through the pain for lasting relief. Each person who experiences status migrainosus will have an individual plan for combatting their pain. Unfortunately, no “one size fits all” approach or silver bullet currently exists. But there is hope. It is possible for these cycles to break and for the pain to lift. This is something I must constantly remind myself of when I’m experiencing a flare, because sometimes getting to that point involves an absolutely grueling stretch of time that demands buckets of perseverance and patience. Below, I’m sharing six things that help me to break out of an intractable migraine cycle (this list has been developed over the eight years I have lived with chronic migraine). Disclaimer: this is not medical advice, it is just my experience and perhaps will give you some ideas to discuss with your own doctor. 1. Short-course steroid taper I have tried many tapers various steroids to break migraine cycles and consider them one of my “last line” interventions for intractable migraine. My neurologist and I try to limit my use of steroids due to systemic stress on the body and the long list of disruptive side effects they come with (intense insomnia and irritability are the worst for me) However, around day 3 or 4 of a steroid taper, I consistently feel some relief (even if it is very minimal) and am able to lean less on my acute rescue medications. I have done steroid tapers lasting from 3-14 days. They aren’t a magic cure, and I have had times where they haven’t helped nearly as much as I hoped, but they are one of the most dependable tools in my arsenal for managing status migrainosus. 2. Outpatient infusion I’ve done a handful of different types of outpatient infusions and found them to be very “hit and miss” in terms of their effectiveness in breaking intractable pain. However, an intense migraine cycle can land me in a pretty desperate place, and if something has helped at all in the past, I am usually willing to try repeating it. Although many infusion medications haven’t helped me, certain combinations have provided short windows of relief. There have also been times where I’ve gone in for an infusion, only to have my pain escalate back to 9/10 that same day, which is always heartbreaking. There is no right or wrong way to approach infusions when it comes to managing intractable migraine, and when I’m making decisions about what I “should” do, I try to constantly remind myself that every single person’s experience is as unique as their fingerprint, and to trust my intuition. 3. Deep sleep This one is tricky. For me, one of the most disheartening parts about status migrainosus is that sleep will often incubate migraine pain. Sometimes I wake up literally baffled at how pain can escalate so much when I am supposedly “resting” and “restoring my body.” Going to sleep with my head hurting only to then wake up with excruciating pain is one of the most trying and heart-wrenching aspects of a bad migraine cycle. But, there is something to be said for the power and potential of deep sleep to help break a pain cycle. During an aggressive headache cycle, I will sometimes combine my typical rescue medications with a sedating medication from my neurologist. This strategy has a pretty unreliable success rate for me; it is probably around 30%. But, because I know that sleep is important when your body is fighting so hard, I continue to experiment with and hopefully find combinations of tools that will help me to achieve the goal of resting my body. So, even though this strategy doesn’t consistently “work” to break my pain, I do think it is an important aspect of my treatment. 4. Hibernation bubble When I’m in a bad migraine cycle, I have to be extremely intentional about my energy, activity, and interaction. This includes phone calls, text messages, outings, etc. When things are at their worst, pain-wise, I retreat to my “hibernation bubble”. I’ll put my phone on airplane mode, cancel all appointments and focus completely and solely on nurturing myself through the pain in whatever way I need in any given moment. Sometimes this means downloading a new audiobook and literally listening to it for 6 hours straight in bed with the curtains closed. Other times it means sitting on the floor of my shower for temporary pain relief. Or getting into comfortable clothes, grabbing my ice hat from the freezer, and listening to repeats of a favorite TV show for distraction. Other times it’s letting myself cry and feel the hurt and pain (even though crying escalates the pain). In my hibernation bubble, I put zero expectations on myself and make managing my pain the top priority. It’s a temporary state where I keep telling myself, “do what you need to do and nothing else”. Relying on this bubble of safety is a way to get me through when I feel like I can’t do “it” anymore. 5. Time and patience I almost cringe writing this because I know that when you are in the middle of weeks of unrelenting pain, this feels like the most unhelpful advice in the world. However, for me, it truly is one of the bedrocks of getting through status migrainosus. I repeat mantras that remind me of the impermanent nature of everything. One of my favorites is: this can and will change . Sometimes, when I am doing everything I can to break the pain and it isn’t working, the only thing that keeps me going is the knowledge that it simply cannot last forever. I remind myself that I have experienced migraine cycles that felt never-ending before, and have I always come out of them… eventually. 6. Urgent care/emergency room The last resort is always to visit urgent care or the emergency room. Part of what makes this such an undesirable option is you never know what you’ll get (care-wise) until you’re actually there. I have gone into the ER with written instructions from my neurologist. Some doctors follow the list exactly, and others decide that “they know best” and do something completely different. This is so hard and stressful. However, when you are truly at a breaking point with your pain, sometimes it is necessary. Many migraine patients have horror stories from the ER, but I can say with a grateful heart that, on the whole, my experiences have been more positive than negative. If you do find yourself in the position of having to go to the ER, a few things I’ve found helpful are: Have a plan of what to ask for with your headache specialist Pack ice packs/sunglasses/headphones/hat Make sure to bring someone who is familiar with your migraines and can advocate for you. It can be absolutely soul-crushing to go through the experience of getting migraine treatment in the ER and then have your migraine escalate the next morning, but there is no shame in reaching a point where you need help, even if it is temporary. Some treatments I have tried that haven’t helped me (but have worked for others!) and might be worth talking to your doctor about: Nerve blocks SPG (spenopalatine ganglion) blocks (can be used both as acute and preventative treatment) Regular outpatient infusions Lastly, some patients with intractable migraine wind up being admitted to the hospital for inpatient treatment for a few days. This is something I haven’t personally done, but I’ve gotten extremely close to needing (have even scheduled admittance dates) a handful of times. It’s a very scary place to be and can feel downright apocalyptic to have migraine pain so severe it requires hospitalization. But it is a widely used tool for out of control migraine pain, and something worth considering when the circumstances call for it. The people who endure status migrainosus are some of the toughest people around. It’s an isolating battle fought behind closed doors and blackout curtains. But, I want you to know that if you’ve been to that dark place, fighting that agonizing unseen enemy — I see you, I understand your pain and I am in total awe of how strong you are.

Natalie Sayre

What Hurricane Ida Taught Me About Evacuation and Chronic Illness

After 15 days on the road, the solace I feel as I write, snuggled cozily in my bed, blackout curtains pulled and soft, gentle comfort cocooning me, is impossible to put into words. I feel visceral gratitude for my home and space, a gentle hum enveloping my being and flooding me with soul-deep relief. Hurricane Ida was the first major hurricane I’ve been through, and I know I will be processing the layers of this experience for a while. As an uptown New Orleans resident for nearly eight years, I’ve seen my fair share of tropical storms and a handful of low-grade hurricanes. Now, on the other side of Ida, I realize how deeply unaware I was of the depth of the trauma and disruption a force of nature this strong can cause. In the two weeks of absolute groundlessness while we were evacuated, I learned and laughed and cried and shattered and put myself back together again more times than I can count. I felt an entire city spin into fight-or-flight mode nearly overnight. I witnessed more gas stations run out of fuel than I ever thought possible, hundreds of miles of downed trees, countless snapped power line poles, and a sea of blue roofs along the interstate covered in tarps to prevent further water intrusion after sustaining significant damage. It’s my deepest hope that these words and reflections whisper some comfort into the heart of anyone else impacted by Ida, or any other natural disaster. I am full of gratitude that after two weeks away, we are safe and sound at home and cleaning up very minimal damage. At the same time, I know that pain is pain — and no matter its size — it is always valid. I know the devastation from this storm runs deeper than I can fathom, and to all affected, please know you’re in my heart. Here are some of the lessons that Ida taught and reinforced for me: 1. You are allowed to make decisions for yourself that others might not understand or support. Throughout our two-week evacuation, this was one of the lessons that felt like it washed through me day after day. Each morning, afternoon and hour my husband and I made the best decision we could at the time, with the information available to us. We were working with data that was shifting at a rapid pace and trying to manage my chronic illness symptoms which often were changing with similar unpredictability and speed. In retrospect, there are certain choices we could have made that would have simplified our evacuation and minimized the exhausting toll it took on my physical body. For example, we initially drove 45 minutes north to stay with family, because the proposition of a multi-hour car ride felt utterly impossible given the prior symptom week I’d experienced. Overnight, the hurricane escalated in intensity, and we had to make a last-minute call at 6 am to evacuate even farther north in order to stay safe. Was an early morning mad dash to Jackson, Mississippi easy for me? Not one bit! It was adrenaline-fueled and fraught with uncertainty about what the next few days would look like. However, in each moment, we evaluated our options with immense care, and I’m able to look back upon them with love and compassion. We moved one step at a time, in the direction of what “felt right for right now.” We did this even when others didn’t fully understand the myriad of factors and circumstances and the constantly shifting terrain that we were navigating. Having a hard time while with a hard thing does not mean you are coping poorly. 2. Having a hard time while with a hard thing does not mean you are coping poorly. Did you hear that? Maybe read the sentence a few more times while taking some long, slow, deep inhales and exhales. I’ve written multiple articles on this concept, and it’s still something I cannot hear enough. When I am at my lowest and struggling the most, I often slip into feeling like I must be doing something wrong if things feel so hard. Sometimes I forget that “coping” is not synonymous with “erasing pain.” Coping is meant to soothe and ease our journey through challenging circumstances, not something that can wave a magic wand and make what is difficult disappear. In my most difficult moments, I always try to remind myself that the best thing I can do is to take loving care of myself, and to do it just a little bit more gently. Sitting with whatever pain is making my heart and body ache and wrapping it in comforting warm love. There are days where the pain is so enormous, there is nothing I can do but love my broken self through it and allow myself to feel the winds of hopelessness whip through me. On days like these, letting myself go to bed without fixing or labeling my exasperation as wrong is one of the most courageous coping skills I can deploy. 3. You are not in a chess match with your symptoms, sometimes pain happens for no clear reason. There will be days where triggers may be high and yet you have low pain and other days where despite your best efforts to mitigate triggers, you find yourself in high, excruciating, unrelenting pain. It’s imperative to remind yourself often that you’re going through something that has a cumulative effect, and that what you feel today isn’t necessarily about what you do on any particular day. As hard as it is, give yourself permission over and over again to surrender to the mystery of how and what contributes to pain peaking, especially when you’re sprinting in survival mode. This is one of the most challenging aspects of daily life with chronic illness for me, and it was only heightened during our evacuation. It is confusing to experience symptoms that can be so unpredictable and inconsistent even as you do your best to manage your energy with gentle care. On some days of our evacuation adventure, I was genuinely baffled by the physical and emotional resilience my body displayed. On days that “should” have been absolutely horrendous symptom-wise, considering the severity or frequency of triggers I was exposed to, I sometimes found myself in low pain. In contrast, there were other days, full of restful downtime, and doing everything “right”, that were absolutely, sheerly, brutally, agonizingly difficult. Reminding myself as gently as possible that escalating pain is not directly correlated to making “bad” or “wrong” decisions was one of the most important ways I softened the jagged edges of moving through hard things. 4. You are allowed to hold heartbreak, pain, and grief in one hand — and — joy, lightness, and gratitude in the other. This is a permission slip I know I’ll be giving myself for the rest of my life, and I hope that it’s one you can begin to offer yourself, too. We are all dynamic beings, and we deserve to allow ourselves to experience the full spectrum of the human experience in every present, aware moment we are able to drop into. When going through something challenging, it’s often hard to “lean in” to joy. This is both because it feels unnatural and, especially when managing the symptoms of chronic illness, there is a fear that others will assume that we can’t be struggling if we are also experiencing joy. For years, I was stuck in this limiting belief, as if putting boundaries around my joy was the price I had to pay for others to believe the depth of my pain. One of the most healing things that has happened to me since my chronic illness diagnosis has been learning to hold space for joy and pain to exist in the exact same breath. Navigating the Ida evacuation, this lesson came into play over and over again. Inside of stressful days, anxious evenings or symptoms flaring, I allowed joy to float through my experience like warm, golden dust particles in the air. Sometimes, the light would catch just the right way, and my husband and I would start laughing over something goofy. Other times, the gentle snore of my dog filled me with gratitude and love for his big presence in our chaotic journey. Giving myself permission to embrace moments of light no matter the size of the pain also present, not only transformed those two weeks — but has also illuminated the way I move through my life at large. 5. You are more resilient than you feel in your most broken moments. You don’t have to feel brave to be brave. One of my favorite mantras in moments that I feel like I am lost at sea clinging to a piece of driftwood while waves crash and thrash around me is, “courage rides on my inhales and exhales,” whether I can feel it there or not. I can’t even begin to count how many moments during our evacuation experience I was afraid that my resilience had dried up and run out. On our seven-hour drive to Austin, TX I experienced a migraine attack that escalated with each passing mile despite me throwing every single tool and medication in my arsenal at it. During the subsequent two days, my pain stayed at a solid 9/10, only budging the smallest amount in the moments I sat in the shower to let the hot water run over my eyes. Some evenings, I felt gripped with anxiety about the number of tasks that lay ahead of us in a 36 hour period, requiring more energy and stamina than I normally expend in a whole week (or three!) In these moments that felt utterly impossible, I reminded myself that I have made it through impossible pain before, and I could do it again. Very much like a storm, the emotional state of feeling like I was not resilient enough to withstand would blow through, and my courage would return. I just had to patiently wait it out and create space for what was happening to be. 6. Pain makes everything a little bit harder, so please make sure you are being a little bit more gentle with yourself than usual. At times, I needed the gentle reminder that as a result of chronic illness and pain, I was navigating Ida evacuation with an extra level of complexity than many of our friends and family. Having to consider the way factors like my sensitivity to car rides, heat, stimuli, interaction with others and the outside world at large are inextricably linked with my physical pain experience more consideration and creates additional challenges. Throughout our evacuation, how I might cope with factors like early mornings, multi-hour car rides, staying in a home with multiple people, or finding food that worked with my dietary restrictions were at the forefront of my mind, every single day. Photos of friends and other families we knew making good use of their “hurrication” and turning it into a “vacation,” while I spent days holed up in hotel rooms breathing myself through high pain, were poignant reminders that I was having a very different experience than many of the people I know, love and care deeply for. There were moments where I felt guilty for not being able to keep up with everyone else, or make the same choices other family members made in terms of where to evacuate. When those times felt overwhelming, I would return to the truth that I was living a different experience than theirs because of my chronic illness, which helped me to gently whisper a dialogue of self-kindness back into my thoughts. 7. You can endure things you are certain that you cannot endure. This is a lesson I repeatedly return to in my daily life, but is especially apropos to a life with chronic illness. There are some mountains I face that seem utterly unsurvivable. Standing at the base of one and looking up fills me with dread and a feeling that there is no way I can make it all the way to the top, back down the other side, returning finally to the peace of a gentle, smooth valley. And yet, every single time, I somehow manage to do just that; I learn there is a life force inside me that can do the things I am certain I cannot do, even when I feel too tired to conceptualize what that might look like or believe it to be true. It’s so healing to get to share and connect with you in this way. Thank you to every single person who has taken the time to send notes of encouragement, support, love and compassion. And thank you to all who have taken the time to read this story! I deeply appreciate the fact that in a landscape where we have infinite options for entertainment and finite hours in a day, you have chosen to spend some time here with me. All my love, Natalie

Natalie Sayre

Do You Gaslight Your Own Chronic Pain Experience?

One paradox that I have discovered in my nine years living with daily chronic pain is this — despite the fact that I am the person most intimately aware of how severe the pain is, there is also a part of me that minimizes and questions its validity much of the time. “Gaslighting” refers to: psychological manipulation that causes a person to question or doubt their sanity, judgment, experience and memories. Whenever I read about gaslighting, I think to myself, “wow, that’s so awful.” And yet, in some ways, it’s something I do to myself on a fairly regular basis as a result of balancing on the tightrope of living with chronic pain and trying to interact with the world. There are times, especially when I’m experiencing high pain, where my inner critic runs wild with thoughts that fuel a gaslighting loop with seemingly endless ammunition: Is the pain really that bad? Am I exaggerating? Why do others seem to handle this much better than me? I should be able to do more than this, shouldn’t I? If I really cared, wouldn’t I push through? If I were really a hard worker, I wouldn’t let this pain slow me down! What is most shocking to me about the phenomenon of gaslighting my own chronic pain experience is how persistent the habit can be. I find myself doing it much too often, and much too easily, even as I work to cultivate a healthy mindset and toolbox of coping skills. Since my journey with chronic illness began, I’ve devoted hundreds of hours to working on improving the relationship between my mind and body, to finding a way to exist with more peace and acceptance alongside debilitating physical pain. Today, I have a strong foundation of soul-care practices that guide my days and I feel a deep sense of self-love toward myself — a type of acceptance that I didn’t know I was capable of when my journey began. And still, there are times when the cruelest and most critical voice in the room about my experience with chronic pain and illness is the one in my own mind. Recently, on one of my Instagram stories I shared about the fact that sometimes, when I’m around other people, I find myself “forgetting” that everyone else isn’t also masking an intense struggle with physical pain. I look around at smiling faces, friends laughing and drinking and talking with ease — and slip into thinking, “See? They’re doing it, why is it so hard for you?” Managing pain has become such a normal part of my life, I can forget that everyone else isn’t having a similar experience. I forget that they are not busy wondering if they should take rescue medication to manage symptoms that have kicked up while they try to follow the group conversation. They are not considering whether it would seem odd to ask the host if it would be possible to lie down in a darkened room for a little while. Nor are they diligently avoiding trigger foods and alcohol, stepping outside to quickly eat the “approved” snacks packed in their purse while doing breathing exercises to try and calm their nervous system. As I go down this spiral, at some point, it usually hits me that it feels hard for me because it is different for me. Most of the time, the people I am with aren’t just “acting” like they’re not in physical pain; they are actually, truly, really not in physical pain. This absurdly obvious revelation genuinely helps me soften towards myself and pump the brakes on self-gaslighting thought spirals. In this way, I can turn down the volume of my self-criticism and crank up the volume of my self-compassion. In these moments of mindfulness, it’s clear to me that I can get so swept up in using my mental and physical energy to push through pain that I forget to validate just how hard, and just how real, my experience of it is. This awareness reminds me of the truth that if I knew any of the people around me were experiencing what I was and felt how I felt, I’d be the first one to urge them to go rest in our guest room, take medication, leave early, or do whatever they needed to do to take care of themselves. Without hesitation, I would kindly reassure them that doing so is allowed, OK and important. I w ouldn’t ever put the kind of pressure on someone I love who is hurting that I so frequently berate myself with. Part of my journey toward loving myself unconditionally has involved learning to recognize and interrupt this pattern of minimizing my experience. It’s not something I’ve been able to fix with a single moment of epiphany; rather it has taken having a consistent commitment to kindness, to “catch and release” any thoughts of gaslighting and replace them with compassion, over and over and over again. Another way I have addressed this damaging habit has been to talk about the struggle I so often deal with in the privacy of my mind with my closest friends and family. These conversations help them to be more aware of the inner turmoil I often hide behind a smiling face and cheery conversation and help me by nudging me toward taking the steps I need to take to care of myself. Invisible illness is a tricky path to navigate, and when I do catch myself gaslighting my pain, I try to take a deep breath and release frustration. I allow the thought, “oh, how human of me” to wash through my being. I remember that with every new inhale and exhale, I have the opportunity to make a new choice about the script running through my mind and the way I would like to respond to my “now” moment. I hope that if you live with chronic pain (or love someone living with chronic pain) these gentle tools will help you learn to reframe your thoughts too. And if it’s one of those days when you need a reminder that what you’re going through is real and true, here it is: What you are going through is real and true. Read the words, put your hand on your heart and take a breath. Inhale, what I am experiencing is real and true. Exhale, I release resistance and embrace myself with love, exactly as I am.

Natalie Sayre

The Support I Need During a Chronic Illness 'Mega-Flare'

I’ve been living with chronic illness for nine years and in that time, I have come to understand how challenging it is to experience a flare that lasts for several days, weeks, or even months. Often, these flares are more intense and painful than normal and it is difficult to explain their impact to friends and family. One of the tough realities of having a chronic illness is that both you and the people in your life get used to seeing you navigate physical pain on a regular basis. Frequent flares become a part of life. And for better or worse, you and your relationships adjust to that truth. When this becomes the norm, others can struggle to understand and comprehend the depth of these extraordinarily difficult flares that are significantly more painful or persistent. Time and time again, I find it challenging to differentiate the experience and communicate the severity of entrenched, treatment-resistant, prolonged pain compared to the more typical ebbs and flows that are part of my “baseline” experience of chronic illness. When a prolonged flare of elevated intensity is ongoing — symptoms kicking up from “normal bad” into the realm of “extra bad” —  the level and type of support I need from others shifts too. From the outside, others can’t necessarily perceive anything different about what I’m going through — even as a flare tears through my being with white-hot intensity for weeks on end. I have found that the deep irony of these intense and prolonged flares is that they demand every last ounce of my effort and energy to manage the day and my pain. And although I might be desperate for more help, sometimes, simply surviving doesn’t leave me with any additional stamina to open the conversation with people I love about just how hard things have been. In addition, during these pain cycles I can become tired of my own, “still really struggling” updates. I feel exasperated with my reality — by having to answer the, “how are you doing today?” question with, “things are still really bad,” over and over again. Even though it is the truth, sometimes I still feel like I’m complaining. And often, I feel like my friends and family don’t know how to reply. These intense flares can be mysterious both in their arrival and departure. They often aren’t patterned, and the “lead-up” or escalation of symptoms is only visible in retrospect. When I’m smack-dab in the middle of a “megaflare,” it’s hard to escape the worry spiral that leads me to think that I must be doing something to contribute to my worsening state. Inside these flares, I remind myself as often as I can remember that the intensity of the pain I am experiencing is not a reflection of the effort I’m putting into managing my health and well-being. As I look back at my yearly calendar, I can see that some months, I have a surprising threshold and resilience for appointments, socializing, and projects. Other months, even when I’m mindfully slowing my life down and being extra protective of my energy, an entrenched flare sinks in and doesn’t let up despite all of my best efforts. One of the most helpful forms of support, when I’m going through a flare that’s surpassed “normal challenging” and soared to the realm of “extra challenging,” is recognition and validation of my reality from an outside source; family, friends, or a member of my medical team. The isolation and pain that accompany a “mega-flare” often cause my thoughts to weave a storyline about how others perceive my lack of ability to “show up” in the way I want to. When a friend takes the time to send me a text and say, “I know things have been hard lately and I just want you to know I see how tough you’re being and I’m totally here for you” or offers to come over and walk my dog because they know I’ve been extra stuck in bed — it means the world. From my closest circle of support, help with practical life tasks also means the world. Sometimes my husband will type replies to text messages that have built up over weeks as I dictate them aloud; a normally simple task that feels too overwhelming for me to tackle solo. My Mom, who lives across the country, finds ways to reduce the stress of “life admin” by ordering groceries to be delivered to my house, calling insurance reps or doctors’ offices, and sending me small encouraging gifts from Amazon. My little brother has perfected the listening art of letting me fall apart, spilling my fear, worry, and frustration out loud — and then holding space for me to talk myself back to a more stable place. My dad, steady as a rock in a river, knows how to be present with me when I’m at my most terrified and hopeless with presence and love, waiting for the waters to still and calm to return. Inside a severe flare, each small act of support from loved ones feels like a life raft. There are times in an entrenched chronic pain cycle where the waves are so high, so continuous, I feel utterly hopeless. Being locked in a very small room with very big pain can make you feel like there isn’t a way out. Every time someone notices and validates what I’m going through, it’s like they open the door a small bit and allow some light to spill in. If this is something you’ve found yourself navigating, please know that what you’re going through feels really hard because it is really hard. Struggling does not mean that you’re coping poorly or doing something wrong. It simply means that you are navigating something very, very difficult. When you find yourself in seasons of more manageable and lighter pain, practice having conversations with your people about how they can help you when you experience a megaflare. Give yourself and your loved ones lots and lots of grace. Unfortunately, communicating about chronic illness and support isn’t something we are taught in school, and what we are taught in society and the media is often a gross misrepresentation of the chronic illness experience. Additionally, your chronic illness experience is as unique as your fingerprint. The type of support you need is singular, as is the type of pain you experience and its particular patterns and struggles. Remind yourself and your people that you’re navigating uncharted territory, and be gentle when you need to reroute. Unfortunately, there’s no magic fix to teaching people how to help you navigate entrenched pain cycles — but if you use love as your GPS, you’ll continue to move in the right direction, lighting small candles in that dark room of big pain to make it more bearable and remind you that you are not alone.

Natalie Sayre

The Support I Need During a Chronic Illness 'Mega-Flare'

I’ve been living with chronic illness for nine years and in that time, I have come to understand how challenging it is to experience a flare that lasts for several days, weeks, or even months. Often, these flares are more intense and painful than normal and it is difficult to explain their impact to friends and family. One of the tough realities of having a chronic illness is that both you and the people in your life get used to seeing you navigate physical pain on a regular basis. Frequent flares become a part of life. And for better or worse, you and your relationships adjust to that truth. When this becomes the norm, others can struggle to understand and comprehend the depth of these extraordinarily difficult flares that are significantly more painful or persistent. Time and time again, I find it challenging to differentiate the experience and communicate the severity of entrenched, treatment-resistant, prolonged pain compared to the more typical ebbs and flows that are part of my “baseline” experience of chronic illness. When a prolonged flare of elevated intensity is ongoing — symptoms kicking up from “normal bad” into the realm of “extra bad” —  the level and type of support I need from others shifts too. From the outside, others can’t necessarily perceive anything different about what I’m going through — even as a flare tears through my being with white-hot intensity for weeks on end. I have found that the deep irony of these intense and prolonged flares is that they demand every last ounce of my effort and energy to manage the day and my pain. And although I might be desperate for more help, sometimes, simply surviving doesn’t leave me with any additional stamina to open the conversation with people I love about just how hard things have been. In addition, during these pain cycles I can become tired of my own, “still really struggling” updates. I feel exasperated with my reality — by having to answer the, “how are you doing today?” question with, “things are still really bad,” over and over again. Even though it is the truth, sometimes I still feel like I’m complaining. And often, I feel like my friends and family don’t know how to reply. These intense flares can be mysterious both in their arrival and departure. They often aren’t patterned, and the “lead-up” or escalation of symptoms is only visible in retrospect. When I’m smack-dab in the middle of a “megaflare,” it’s hard to escape the worry spiral that leads me to think that I must be doing something to contribute to my worsening state. Inside these flares, I remind myself as often as I can remember that the intensity of the pain I am experiencing is not a reflection of the effort I’m putting into managing my health and well-being. As I look back at my yearly calendar, I can see that some months, I have a surprising threshold and resilience for appointments, socializing, and projects. Other months, even when I’m mindfully slowing my life down and being extra protective of my energy, an entrenched flare sinks in and doesn’t let up despite all of my best efforts. One of the most helpful forms of support, when I’m going through a flare that’s surpassed “normal challenging” and soared to the realm of “extra challenging,” is recognition and validation of my reality from an outside source; family, friends, or a member of my medical team. The isolation and pain that accompany a “mega-flare” often cause my thoughts to weave a storyline about how others perceive my lack of ability to “show up” in the way I want to. When a friend takes the time to send me a text and say, “I know things have been hard lately and I just want you to know I see how tough you’re being and I’m totally here for you” or offers to come over and walk my dog because they know I’ve been extra stuck in bed — it means the world. From my closest circle of support, help with practical life tasks also means the world. Sometimes my husband will type replies to text messages that have built up over weeks as I dictate them aloud; a normally simple task that feels too overwhelming for me to tackle solo. My Mom, who lives across the country, finds ways to reduce the stress of “life admin” by ordering groceries to be delivered to my house, calling insurance reps or doctors’ offices, and sending me small encouraging gifts from Amazon. My little brother has perfected the listening art of letting me fall apart, spilling my fear, worry, and frustration out loud — and then holding space for me to talk myself back to a more stable place. My dad, steady as a rock in a river, knows how to be present with me when I’m at my most terrified and hopeless with presence and love, waiting for the waters to still and calm to return. Inside a severe flare, each small act of support from loved ones feels like a life raft. There are times in an entrenched chronic pain cycle where the waves are so high, so continuous, I feel utterly hopeless. Being locked in a very small room with very big pain can make you feel like there isn’t a way out. Every time someone notices and validates what I’m going through, it’s like they open the door a small bit and allow some light to spill in. If this is something you’ve found yourself navigating, please know that what you’re going through feels really hard because it is really hard. Struggling does not mean that you’re coping poorly or doing something wrong. It simply means that you are navigating something very, very difficult. When you find yourself in seasons of more manageable and lighter pain, practice having conversations with your people about how they can help you when you experience a megaflare. Give yourself and your loved ones lots and lots of grace. Unfortunately, communicating about chronic illness and support isn’t something we are taught in school, and what we are taught in society and the media is often a gross misrepresentation of the chronic illness experience. Additionally, your chronic illness experience is as unique as your fingerprint. The type of support you need is singular, as is the type of pain you experience and its particular patterns and struggles. Remind yourself and your people that you’re navigating uncharted territory, and be gentle when you need to reroute. Unfortunately, there’s no magic fix to teaching people how to help you navigate entrenched pain cycles — but if you use love as your GPS, you’ll continue to move in the right direction, lighting small candles in that dark room of big pain to make it more bearable and remind you that you are not alone.

Natalie Sayre

When Chronic Illness Makes You Miss Being Busy

Busy. When I think of the “busy” that I miss in my life, it’s not necessarily a packed schedule running from one thing to the next. It’s the feeling after busy. Of getting home and plopping onto the couch because I’m tired from activity and interaction, not because of a full day of physical pain. Of sinking into rest as I let out a deep exhale and lay my head on my pillow after a long day. Of waking up and knowing that I have a whole to-do list of things to accomplish and that the only barrier between me and getting it all done is either my motivation or the hours available in a day. In life with chronic illness, stamina and pain have replaced time as my main barrier to getting things done. My days demand a slow pace, near-constant pain management, pushing through fatigue, activity pacing, and listening to limitations my body sets forth with love. I miss the afternoon energy dip that comes from having a full morning of interacting, working, brainstorming, and engaging with the outside world. I miss transitioning from the day’s responsibilities when evening rolls around to dinner with my family or drinks with friends. On many days, it’s easy to look with envy and longing at the pace of so many of my friends. Their “mundane” busy (even inside of quarantine) has become something that I see as a privilege. When another Monday morning rolls around and my husband drags his feet to get up with his alarm and to the hospital on time, a part of me feels a pang of jealousy and sadness. Losing my ability to reliably commit to a school or work schedule has made me appreciate what a gift it is to be able to depend on your body in that way. My days look very different than most of my peers. My “busy” looks different. I am still busy; but that busy entails creating space for healing, taking care of my body and bargaining with my energy. I never anticipated spending so many hours strategically filling the times when I am in pain. It’s a strange feeling to be stuck at home and intensely limited in your activity. Many days I’m limited in my ability to go on a walk outside, drive, look at screens, read or even talk on the phone. It can be demoralizing to stare down the barrel of a day knowing that it will be “busy” with pain management, acceptance, release and surrender. Letting go of my old definition of “busy” has acquainted me with stillness and quiet. It’s presented me with an opportunity for deep personal development and growth. It has forced me to stare directly at my value outside of my to-do list or accomplishments and learn how to love myself exactly as I am, even when it doesn’t reflect what I had imagined for myself. It’s taught me how to adopt a mindset that focuses on the importance of who I am being, more than what I am doing. There is so much I have learned from slowing down as a result of my health challenges. I am forever changed as a person and human from these experiences, and I know that they’ve shaped me into a more patient, compassionate, mindful, accepting and graceful version of myself than anything else could have. However, it doesn’t mean that there aren’t many days where I wish I could pick up the pace. It doesn’t erase the envy and pang of ache I feel watching the world “go back to normal” post-COVID, while I do not. There are moments I desperately wish I could speed up my to-do list, and, once again, experience the bustle that I used to see as a chore and now view as a privilege. But for today, I will breathe patience into my now moment. I will find peace here. I will learn here. I will love here. And I know when the day comes that “busy” re-enters my life, I will appreciate it and integrate it into my world with consciousness and gratitude I never would have had otherwise.