Category: Flare Management

Guiding Principles: A Realistic Approach to Autoimmune Disease Remission & Better Health

Posted on by Karin W

Guiding Principles: A Realistic Approach to Autoimmune Disease Remission & Better Health

Karin W

September 8, 2023

Our guiding principles provide direction and support to empower your journey in navigating autoimmune disease and chronic illness. 

We embrace an incremental approach to holistic health, disease management, and remission. Our programs are built on a foundation of small, simple lifestyle changes that anyone can do anywhere. 

A common misconception about autoimmune diseases and chronic illnesses is that you have little control over your health trajectory. Plan for a life of chronic pain, medications, and appointments. In reality, while you may have a steeper hill than others, you do have the power to reduce disease activity and, ultimately, achieve remission.

“We have a totally different diet, with processed foods, additives and fast foods. We’re more sedentary. There’s an obesity epidemic. We have a different pattern of infectious agents, even pre-COVID-19, with more emerging yearly. The environment is noisier, and there are more stressors.”

-Frederick Miller, M.D., scientist emeritus with the Environmental Autoimmunity Group at the National Institutes of Health

While your remission is our mission, we’re not focused on the destination. We’re dialed in on the journey. We focus on systematic, incremental, achievable steps to improve your health and well-being. 

We provide the resources to empower your journey that’ll be shaped by your experiences, specific situations, personalities, and preferences. 

The ideal path to remission is sustainable. You don’t beat autoimmune disease in one day; you take it one step at a time, #oneaction at a time, until living a healthy, fulfilling life is second nature. And one day, you’ll realize how far you’ve come. We promise. 

A Different Approach to Creating Sustainable Habits

Five stages of a sprouting plants in soil, sunlight.

We focus on one step at a time, but even that can sometimes feel daunting. The good news is that we can break it down even further.

Rather than making dramatic lifestyle changes all at once, we focus on small things you can do to change your behavior and habits. Take it one step at a time and find the small victories in everyday moments, even if they’re micro-movements toward your goal.

This approach allows you to build healthy habits that stick with you for the long haul. 

Invigorate’s Guiding Principals are guidelines intended to help empower your journey but by no means dictate it. After all, we know a one-size-fits-all approach never works, so lean in and adjust, swap, modify, or do whatever you need to to make the most out of your Invigorate experience.  

Invigorate Guardrails to Empower Your Journey: 

1. Dial in on Your Journey, not the destination.

None of us know how long we’ll be here, and as much as we want to know where our paths will lead us, the only time guaranteed is now. This moment now is our life. 

Young woman leaning out car window as she's pulled over, making a heart with her hands. Mountains in the distance.

We strive to shift depressed thoughts of the past and anxious thoughts of the future to considerate thoughts of the present. We can take one step toward a more meaningful future by focusing on the present. 

Are you on a path that empowers your journey or one that makes it more challenging? Every decision we make and every action we take slowly but surely shapes the course of our journey.

Sometimes, we unknowingly tread on rough terrains that make our voyage harder. But remember, you have the power to change the path you’re on. Ask yourself, am I taking steps to better my situation? Remember, we only have this moment. The right time isn’t tomorrow, next week, or in the new year – it’s right now. Make the choice to foster self-care, give yourself the compassion you tirelessly give to others, and you’ll find the strength to navigate even the toughest of journeys.

2. It’s Your Journey.

The first step to better health is understanding that you have the power to choose. There are many paths and routes to remission, but your journey is unique. No matter where you’re in life now, know it’s never too late to change for the better.

Narrowly winding road with fall-colored trees on either side.

Each of us has our own experiences and challenges. Our perception of those experiences shapes our unique journeys. The power is in your hands to choose the direction you want to go.

Health is more than physical and emotional well-being—it’s also about understanding how we are connected to the world around us. Practicing healthy habits and self-care allows us to deepen our connection with nature, society, and our communities.

It’s not a race since we’re on different paths, but we can support one another in our winding journeys. It’s hard to make the determination and take the steps towards a healthier life. We can be our own obstacle, but be patient with yourself, focus on the next step, and lean into our community for support. 

3. We’re in this together.

The complexity and intensity of autoimmune diseases can fuel depression and isolation. These systemic diseases are not fully understood, making them hard to explain. Survivors tend to withdraw when they don’t have a supportive network.   

Five sets of hands, each cupping a sprouted plant in soil in a circle.

While our journeys are unique to us and our experiences, that doesn’t mean we must go through this alone. Our Invigorate community can relate and empathize with the challenges and uncertainties of navigating autoimmune diseases and chronic illnesses. We give each other the grace to fall, support to get back up, and encouragement to try again. 

Engage with our supportive community. We share our experiences and tips and have some laughs along the way. Together, we can overcome the challenges of autoimmune diseases and thrive, living life on our own terms. We can do this, and we don’t have to do it alone.

4. Unleash your inner explorer and get curious.

As you embark on this journey of personal growth and self-discovery, it’s crucial to approach it with an open mind. Something may not resonate with you now, but it might resonate with you down the road. 

Our perspectives change as we experience more, especially when managing the challenging health situations accompanying autoimmune diseases and chronic illnesses. An open mind can stretch us to think beyond our current thoughts. 

Try to channel your inner explorer as you journey through the labyrinth of autoimmune diseases. Embracing a spirit of curiosity can be a powerful tool in this voyage. Ask questions, dig deeper, research, and seek out multiple perspectives. This isn’t about finding quick fixes but about gaining understanding. It’s about exploring the many pathways to wellness and identifying what works best for you.

Four kids inspecting branches and pine needles with a magnifying glass.

Curiosity can also lead us to self-compassion, a trait often overlooked but critical in our journey. It involves being gentle with ourselves when we stumble and embracing our imperfections. In our Invigorate community, we encourage everyone to be kind to themselves, to recognize their efforts, and to applaud small victories. Remember, it’s progress, not perfection, that we seek.

Lastly, curiosity urges us to embrace change. Autoimmune diseases can be unpredictable, but we can adapt to new routines, treatments, and lifestyle changes with a flexible mindset. Change can be daunting, but it also brings opportunities for growth and reinvention.

So put on your explorer’s hat, stay curious, and open yourself to the remarkable journey of self-discovery.

5. Stick to one or two steps at a time. 

This moment now is when we can drive change by dialing in our thought patterns and daily habits. Slow and steady wins the race. We recommend focusing on one or two steps at a time, even when you can take on more. 

For example, if you want to incorporate diet and lifestyle changes, start with a few simple ones, like drinking more water or going to bed 30 minutes earlier. Once those habits become second nature, then add more. Don’t overwhelm yourself by trying to do too much at once!

Stone steps leading up through wooded area towards sunlight.

Or, if you want to take a couple of steps down the same path, ensure one is an easier step to take. For example, if you’re looking to double down on physical activity, one step could be incorporating a stretching routine, and another could be walking three times a week.

Remember that the goal is to find sustainable ways to create healthy habits. This means taking one step at a time and adjusting as you go. Don’t be afraid to experiment!

While incremental change feels tiny, it adds up to big results. Trust the process! You are capable of so much more than you give yourself credit for. We believe in you. Now, let’s start on this incredible journey together!

Tip: Having an accountability partner or supportive friend can be key to helping you get over hurdles. Join our Facebook community for support, encouragement, and grace in navigating your journey.

6. Get comfortable being uncomfortable. That’s when change happens.

Systems make change possible. When navigating life’s complexities with an autoimmune disease, mindset is everything. It’s about leaning into the sweet spot between comfort and discomfort. That’s where growth and transformation happen.

It’s about challenging yourself to step out of your comfort zone, one small step at a time. You’ll be uncomfortable sometimes, but embrace the discomfort of growth and learning as part of the journey.

While each step individually is critical, having a plan and structure is also critical to success. Using systems and processes to simplify your life can help you embrace change. It also helps create structure, making it easier to get through tough health days.

If you don’t plan how to do it, you’ll likely give up before you start. Willpower is not a thing; we’ll fail if we rely on it. Discover the 6 Sources that Influence Our Behavior and learn how to control them for a higher chance of success.

Everything affects everything. Five hundred crunches alone won’t get you a six-pack, but some crunches and a salad will, eventually. Everything is interconnected, so we take a multifaceted approach to health and well-being. Throughout the Invigorate experience, we note Ive+ habits, keystone habits that benefit beyond one action’s direct impact. Best-selling author Charles Duhigg discusses the benefits of leveraging keystone habits in his book The Power of Habit.

Systems fail, so turn tough times into tools for the future.

We can want with all our hearts to change, create the perfect plan, and muster up the courage to take a step or two, only to find our faces smashed into the ground without realizing what even happened!

Women who fell face-first into the mud.

This happens more often than not, especially when we’re just starting out. It’s okay. We can use this as an opportunity to grow and learn. Failures are only failures if we don’t learn from our experiences. If we reflect on why we failed, then we can course correct to try again.

Instead of blaming yourself or giving up, take stock of the situation and ask honest questions about why it happened. What did you do right? What could have been done differently? The answers will help you adjust your approach for the next step. By continuously reflecting, refining, and implementing, you’ll develop systems that work for you.

Remember, the more you fail, the more you learn and grow, and that’s how we blossom. 

7. Embrace the season you’re in.

A realistic approach to this journey includes recognizing and accepting the season we’re in.

We’re used to planning things in hours, days, weeks, months, and years, yet our experiences go by in moments, scenes, and seasons. Those moments blend and melt together to form our memories.

Depiction of the four seasons. Spring is cherry blossoms. Summer is green wooded area. Fall is branch with leaves changing to orange. Winter is barren branches covered in snow.

Located in Minnesota, we get a full four seasons; yes, even summer. In the heart of winter, below-zero temperatures and plummeting windshields can make for a long several months.

While we sometimes need to hunker down to get through it, there are many times we brave the elements to enjoy the snow—sledding, skating, skiing, or having an outdoor fire. It can be bitterly cold sometimes, but we embrace the season as it is, knowing it will change again.

As we navigate through our own healing seasons, let’s remember the power of our mindset and the remarkable strength we harbor within ourselves. We can create wonderful memories during our darkest periods, knowing this season shall pass, too, but it didn’t pass us by.

8. Practice selfless self-care for tireless service and compassion.

To serve at the highest level, we first must serve ourselves. That starts by looking within. Self-care should involve a healthy dose of self-reflection and awareness. When we pick the weeds and dig out the soul, we unearth fresh soil to plant new seeds.

“Sugar, by nature, is sweet, and water, by nature, is liquid. When we perform an activity and function which is per nature and as how it has been designed, one experiences harmony. That harmony produces the greatest efficiency, and so the soul, by nature, is designed to serve when we engage in serving and pleasing. That effect of serving and pleasing produces the greatest joy from within.”

How To Achieve SELF MASTERY | Gauranga Das & Jay Shetty Podcast

Selfless self-care—such as practicing mindful meditation, meaningful movement, and sustenance for the soul—will help us become more in tune with our external world. We can then share our own light and energy to impact those around us positively.

Hand letting water drip onto sprouted plant.

So the next time you feel guilty about taking care of yourself, pause and reflect on how caring for yourself will allow you to be a better parent, friend, coworker—human being.

9. Enjoy the music.

Autoimmune remission is a process. It’s not just about reaching remission but living a life that nurtures our health and well-being. 

Life is hard. That’s the point. We’d be bored and complacent if we didn’t face our challenges, struggle, fall, and get back up. That’s a dangerously destructive place to be. Our hardships guide and teach us life lessons—nurturing us to deepen our roots, strengthen our stems, grow leaves, and eventually, blossom. 

We’ll grow without noticing as we embrace our challenges and face our fears. When we do eventually notice, we’ll be further ahead than we ever thought possible. As you embrace the present challenge, remember that this moment now is all that matters. 

So go ahead, sing out loud in the car, and dance in the kitchen with your kids—life is too short not to enjoy the music and dance along the way. 

Dance on, Strivers,
Karin

10 Tools to Nurture You Through Autoimmune Disease Flares & Other Tough Times Living With Chronic Illnesses

Posted on by Karin W

10 Tools to Nurture You Through Autoimmune Disease Flares & Other Tough Times Living With Chronic Illnesses

Karin W

May 22, 2023

It’s possible to be in remission for long periods, especially when living a healthy lifestyle, mostly eating nutritious food, staying physically active, managing stress, and maintaining meaningful relationships.

While living a healthy lifestyle is your best chance at keeping disease activity at bay, environmental triggers, life events, and overbooked schedules can each be enough to put our health into an unexpected tailspin.

One winter, I had been eating clean, managing stress, and plugging along just fine each day. Without warning, I was horizontal on my couch with what we thought was the flu. It’d been going around the office, so I wasn’t surprised I caught it. It’s difficult to avoid getting sick while taking immunosuppressants.

After three weeks of no improvement, I was admitted to the hospital, where they ran a gamut of tests. The worst part was my new “roommate,” constantly groaning in pain, sounding like a dying animal, making it impossible to get any sleep. Overly exhausted, undernourished, and missing my kids terribly, I felt every ounce of this autoimmune disease crushing my spirit.

In those moments of utter despair, it’s important to have tools to use anywhere at any time to help you cope with sensory overload and work through tough situations.

Go-To Tools to Help You Through Tough Times with Autoimmune Diseases and Chronic Illnesses

When your world feels like it’s crashing down, your focus should be comfort and self-care. That can be difficult when emotions are running high, so our community has compiled a list of tools to keep in your back pocket for the next time you unexpectedly need them.

1. Your Breathe

When we’re anxious, our bodies tense up, our breathing shallows, and an abundance of cortisone/stress releases into our systems. To reduce anxiety quickly, deep breathing is the surest, most effective way to reduce heart rate. Our bodies are very trainable; we must tell them what to do. The simplest way to do that is to breathe out longer than when you inhale.

Guided meditation videos and podcasts are a great way to learn various breathing methods. Training your mind and physiology through breath has been shown to reduce anxiety while increasing focus and concentration, which can also help with brain fog.

2. Change Views

Getting outside isn’t always feasible, especially if you’re stuck in a hospital room, but changing rooms, or even just chairs, can give you a quick boost in mood. Sometimes even the slightest shifts in perspective can spark a new and hopefully more positive chain of thoughts. Looking at positive images can influence your mood if you have limited mobility.

3. Get Thanking

There is always something to be grateful for. The simple act of noting or writing down a few things you’re thankful for helps squelch negative thinking and helps put things into perspective. It also creates an attitude shift that can positively impact everything from our relationships to our health.

Gratitude is an antidote to worry, stress, and anxiety. It also improves happiness by increasing positive emotions like joy, contentment, love, and pride. Gratitude helps people sleep better and increases energy levels and appreciation for others.

Two easy ways to practice gratitude:

1. Expressing gratitude verbally (to yourself or someone else). Thanking someone who has helped, been kind to you, or brightened your day goes a long way.

2. Note what you’re thankful for in a journal or mobile app. Any notebook will do, but journals and mobile apps like Gratitude offer prompts to help you get over any blocks.

4. Get Grounded

Have you heard of grounding or earthing? It’s the idea that connecting with the earth by walking barefoot or lying on the grass can positively affect the body. And it turns out; science is starting to back this theory up.

Research has shown that grounding can help reduce inflammation and pain and improve mood. Amazingly, something as simple as taking off your shoes and connecting with the earth can profoundly impact your health and well-being. So next time you have the chance, why not try it? Who knows, it might just make you feel a little better.

5. Watch Nostalgic Shows

We’re giving you permission to veg out! The familiarity of nostalgic shows can provide security and calmness, especially when life is chaotic. Mindless shows are also easy to turn on in the background to help decompress in the short term. Set a timer or show limit because too much screen time can exacerbate depression symptoms.

6. Listen to Music

Music has a way of affecting our mood like no other.

It’s amazing how a good beat and catchy lyrics can turn a bad day into a good one in minutes. Whether you’re into pop, rock, hip-hop, or classical, it’s all about finding what works for you. Sometimes, all it takes is a few tunes from your favorite artist to get you out of a funk. So pop in those earbuds, crank up the volume, and let the music take you to a better place.

7. Light Hobbies

You know those days when your body doesn’t want to cooperate? When even getting out of bed feels like a Herculean feat? Those are the moments when having a few go-to hobbies in your back pocket is essential. Maybe it’s knitting, puzzling, or coloring. Maybe it’s something else entirely. Having a favorite activity that doesn’t require a ton of physical stamina can be a game-changer. Not only do they help you pass the time, but they can also work wonders for your mental health.

When you’re feeling anxious or stressed, there’s something incredibly soothing about focusing on a creative project for a while. So next time you’re in need of a bit of zen, reach for your crafting supplies and get to work. Your body (and mind) will thank you.

8. Family and Friends

Relationships are the ultimate human experience. When nurturing and long-lasting, they can bring about a sense of belonging and purpose that is hard to come by otherwise.

The feeling of being seen and valued in a relationship is powerful, and it can boost our mood and self-worth in ways we may not realize.

When we have someone who listens, understands, and appreciates us for who we are, we feel more able to express ourselves and show our vulnerability. And, of course, having a supportive partner or friend can make all the difference in our daily life.

But did you know that chemicals in our brains are released when we form close and loving connections with others? Dopamine and endorphins are two of the many feel-good hormones that can make us feel happier and more fulfilled. Lean into your close relationships, especially during challenging times.

9. Faith and Spirituality

Faith can be tricky because it often intersects with religion, which people have strong opinions about. At our community, we believe that spirituality comes in different shapes and sizes, and you can lean into whatever resonates with you.

Whether it’s religion, the universe, or any other belief system, there’s power in positive thoughts and prayer that can help us find peace even in the midst of chaos. It’s amazing how letting go of the things we can’t control can strengthen our faith. So, take a deep breath and trust that your beliefs will guide you.

10. Develop a Flare Care Plan Before You’re in a Flare

Anyone with an autoimmune disease knows flare-ups and tough mental health days can be a real struggle. When you’re in the thick of it, it can feel like trying to climb a mountain with a backpack full of bricks. Everything seems difficult and exhausting. That’s why a plan is so important before you hit rock bottom.

When you’re feeling well, set up a support system and pick out activities you enjoy and find relaxing. That way, when things get tough, you’ll have a blueprint for caring for yourself during hard times. The simple act of having a plan can help us through.

Try the Tools Before You Need Them

You know what they say, practice makes perfect! The same goes for your toolkit. Don’t wait until you’re in a crisis to experiment with different tools. Take your time to try different tactics and see what works best for you.

The great thing about trying out new tools when you’re open-minded is that you may discover something you never thought would work for you. Plus, once you find what works, you’ll already be a pro when using it in a real situation. So don’t be afraid to get out there and try something new. Trust us – your future self will thank you.

Just Diagnosed with an Autoimmune Disease? Start Here: 3 Key Areas to Focus on for Your Health and Healing Journey

Posted on by Karin W

Just Diagnosed with an Autoimmune Disease? Start Here: 3 Key Areas to Focus on for Your Health and Healing Journey

Karin W

May 9, 2023

Practical Steps to Help You Navigate Life After Your Diagnosis

The diagnosis can suck the air from your lungs, or it can be a welcome relief. People take an average of 4.6 years and see five doctors to get an autoimmune disease diagnosis.

During this time, they can go years with unmanaged symptoms. This situation results in further complications. Getting that diagnosis now means you can work toward remission through treatment.

Yet, managing autoimmune diseases with medicine is only one piece of the puzzle.

Research shows we have more control over our health through lifestyle and self-care than we earlier understood. This is true regardless of the diagnosis or specific disease. This responsibility increases for us as patients.

Yet, it also empowers us to take control of our health journey.

Lifestyle factors can trigger autoimmune diseases. Poor diet, stress, lack of sleep, and sedentary behavior worsen symptoms.

The good news is that there are things you can do to improve your health while managing an autoimmune disease.

1. Ruthlessly Focus on Self-Care by Enabling Your Support Network

Medications can take several months to be fully therapeutic. During this time, managing symptoms and pain is your primary focus. Until you can get the disease in remission, you need more rest–even hours more at times. Taking care of yourself is crucial when managing an autoimmune disease.

That’s where your support network comes in. The extra help can be a game-changer when freeing up the time to care for ourselves. To do that, we have resources to allow your support network, like Give In Kind.

Self-care often gets de-prioritized, though, even when we have help. We are doing many other “more productive” things, but self-care is critical to your overall well-being.

Use the idea of #oneaction to commit to a self-care activity and amount of time, and set a timer. Maybe it’s a 10-minute meditation session each morning or an hour-long yoga session several times a week.

Don’t get caught up on the duration; taking that one action is important.

2. Take Care of Your Head to Care of Your Heart

Chronic illness can take an emotional and physical toll, so it’s important to focus on your mental health. The decision to take care of your mental health can come with many preconceived notions and stigmas.

Still, there are small things you can do to support your mental health. It doesn’t have to be a dramatic commitment.

Believe it or not, these small moments of self-care can have a significant impact on overall well-being.

Journaling a few minutes every day can help. Noting what you’re thankful for in the Gratitude app is beneficial, too.

Taking time out for mindful practices like meditation and deep breathing also contributes positively to mental health.

Social connection is a considerable part of our mental well-being. Your family and friends will support you in their ways.

Still, having people who truly understand and empathize with your autoimmune challenges can help tremendously.

Our Invigorate Facebook group is an active community of autoimmune thrivers and advocates who can empathize and support you anytime.

When looking for more support, seeing a therapist can give perspective. They offer tools to help you navigate challenges accompanying chronic illness.

When looking for a therapist, ask around for someone who specializes in chronic illnesses. You can often read about therapists’ specialties on a practice’s website.

You can also call to speak with an intake coordinator directly. Take advantage of telephone or video conferencing to make scheduling and attending appointments easier.

3. Clean Eating: Diet is Critical to Reducing Autoimmune Disease Symptoms

Our Invigorate community ranks diet and nutrition as the most influential factor in their health journey.

The food we put into our bodies has a significant effect on our physical health and mental well-being. To promote optimal health, eating a clean, whole-food diet consisting of fruits, vegetables, and seeds is essential. Meat can be fine, but we focus on produce and seeds for simplicity.

Their antioxidants and nutrients help your body fight inflammation. They also support your immune system. A good action is to add a green smoothie or salad to your daily intake.

An important part of nutrition is hydration. Over half of our bodies are water, up to 60% on average.

Our water intake is a critical factor in supporting many bodily functions, like lubricating the joints, delivering oxygen throughout the body, preventing kidney damage,

restoring fluids lost through metabolism, breathing, sweating, and removing waste. Despite hydration’s role in our health, it’s been reported that as much as 75% of the population is chronically dehydrated.

How much water should we be drinking?

We should aim for at least one-half of our body weight in ounces daily. To make it manageable, take one action. Fill up your water bottle.

Drink one more bottle today than you otherwise would. Good hydration coupled with nutrient-dense whole foods should help improve symptoms.

*Bonus: our bodies are made to move, but you don’t have to do intense workouts to reap the benefits

When first diagnosed and symptoms are erratic, exercise can seem insurmountable. Yet you don’t need to be doing HIIT workouts six days a week to experience benefits from physical activity.

Light stretching and walking can increase heart rate. These activities lubricate joints and support the range of motion. This is vital for overall health. When you feel ready, you can try many low-impact options.

Exercises like yoga, Pilates, and strength training can improve muscle mass and support overall health.

By adjusting your routine to your fitness level and disease activity, it’s easier to be consistent in moving daily.

Take it #OneAction at a time, especially early on.

We can actively improve our health and well-being by managing our lifestyle. It can be easy to feel overwhelmed when living with an autoimmune disease.

Still, small changes like getting more sleep or eating healthier foods can significantly affect overall symptom management.

Additionally, it creates a support network of family, friends, and professionals. This will guarantee you have people to rely on if your illness feels too much. This allows us to devote time and energy to care for ourselves–emotionally and physically.

A balanced diet, adequate rest, regular exercise, and mental health care contribute significantly. These efforts help nearly anyone with an autoimmune disease. It improves their quality of life and gives them a chance at remission.

The most important thing to remember is that it doesn’t all happen at once. Focus on #oneaction at a time to keep it manageable.

Recovery takes time and effort. Adjust your activity level to match your current state rather than just pushing through. This way, your recovery will go much smoother.

Celebrating Self-Acceptance and Perseverance through Parenting with a Chronic Illness

Posted on by Karin W

Celebrating Self-Acceptance and Perseverance through Parenting with a Chronic Illness

Karin W

May 5, 2023

Surviving: chronic fatigue, hair loss, chronic pain, anxiety, depression, nausea, dizziness, bouts of confusion and inability to focus, insomnia, memory issues, headaches, joint pain, etc.

Striving: a diagnosis! and treatment

How long have you been on your journey with autoimmune issues? While I haven’t been diagnosed, I’ve dealt with autoimmune issues for about a decade. At the very least, I’ve been dealing with something chronic for at least that long.

What was your turning point in looking to improve your health? Basically, now. This is a new journey for me. I’ve put on significant weight and have noticed that even light physical activity that I used to do easily exhausts me within minutes. As the mother of an active 6-year-old, I need to be able to walk alongside her while she scooters around town, sit on her bedroom floor for an hour and play ponies, carry her to bed when she falls asleep on me on the couch.

But I also do it for me. I miss looking in the mirror and not hating myself. What I see isn’t even an echo of what others see because whatever it is I’m dealing with has warped my own perceptions of myself beyond recognition.

And I miss having the energy to actively participate in my life.

What’s something you’ve learned along the way?

Something that’s been a rude awakening, but also freeing, is that what I’m dealing with is (mostly) invisible. It’s hard to offer others the benefit of the doubt when they keep nudging me to do this or that when I’m out of spoons or offer inane advice like smoothies and jogging, but the flipside of that is that what I am frustrated with myself for right now they don’t see.

I shaved my head because my hair loss became depressing. Others see a badass, someone who doesn’t care what others think, an artistic temperament, a free spirit. (And to some extent, they’re not wrong, even if I’ve lost track of her.)

I see dark circles under my eyes, thirty extra pounds, stretch marks, and patches of scalp. I see my calendar and all the events I missed out on. I see my daughter’s eyes when I let her know we have to head back inside because I’m just too tired to continue again.

I know what got me here, and I can hate it all I want, but here’s the thing: most people just see another human living their life. They meet you for the first time wherever you are in your journey, and that’s who you are to them. You see every moment of your own life, the behind-the-scenes exclusive; they see snapshots.

If they judge based on that, eff them. And honestly? I don’t think most bother.

What advice would you give someone starting in their autoimmunity journey?

Meet yourself where you are. It’s okay to want more and to work towards it, and the desire to improve your situation is crucial to seek out the support you need–but on those days where you just can’t? Don’t, and don’t feel bad for it.

What are you currently striving for?

Above all, a diagnosis and treatment–whatever that looks like. I have difficulty making it to appointments, and severe medical anxiety, so I know it will be a long road. But at the end of the day, having a diagnosis will give me a basis for making more informed decisions about my health.

Follow Heather on social: @almostmidwest on Facebook & Instagram. Contact us to share your story.