At the start of 2021, I began to feel off. My back and hips began to hurt, and other symptoms began to creep up that I couldn’t explain. Before this, I was the healthiest I’d ever been- living in an RV with my partner, hiking daily, and staying active. But something changed, and soon, I couldn’t keep up with our life anymore.
At first, it was small things- lying down after doing dishes, struggling to drive due to pain, and even needing help cooking. I saw multiple doctors, took several tests, but everything came back clear. They told me it was just a pulled muscle or lingering virus. But the pain kept getting worse and I kept getting more and more sick.
Every couple of weeks, I’d see another doctor, but no one had an answer. By the end of 2021, I was still working on my blog, but I spent most days in bed, crying. I had constant fevers, dizziness, nausea, hair loss, and joint and back pain so intense that even simple movements were excruciating. More doctors, no answers. So, my partner & I headed to Florida to snowbird, hoping for some relief & relaxation in warm weather and a maybe some new doctors.
During the drive, the pain remained. I couldn’t make it more than an hour in the car before the it became too much. When we finally arrived in Floirda, it had grown worse. I couldn’t feel my legs and experienced unbearable pain. After several hospital visits, still no answers. We kept moving forward, but even weeks later, I still couldn’t walk.
Our life had completely changed. The active, adventurous days of RV living were no longer possible. Instead of waking up and hiking in the fresh air, I was struggling just to get through the day. We eventually made the difficult decision to leave the RV life behind and settle in Florida- something we never intended- but it was necessary to give me a fighting chance at regaining some control over my health.
Over the past three years, I’ve learned so much about managing chronic pain. While the road hasn’t been easy, and I do not have all of the answers, I’ve made progress: regaining the ability to walk for short periods, small outings to the theme parks, and on some days, feeling almost normal again. This journey is far from over, but if sharing my story can make even one person feel less alone or offer a glimmer of hope, then it’s worth it.
Note: I’m not a doctor, and this is not medical advice—just my personal experience.
The Power of Slowing Down: Learning to Listen to Your Body
When chronic pain first entered my life, slowing down was not just a suggestion, it became a necessity. I had spent most of my life rushing from one task to the next, driven by the urge to explore and an ever-growing to-do list. But when my body finally forced me to stop, I realized how important it was to listen to its cues and respect its limits. Slowing down was no longer just a choice.
This shift in pace was not easy, and honestly, it’s something I still struggle with. I’ve always been someone who wanted to do everything and more in a day. Before getting sick, “Rest” wasn’t really a part of my vocabulary, and my schedule was one of constant movement. But when my body hit its limit, when my legs stopped working, my pain levels skyrocketed, and I was faced with the reality that I couldn’t keep up with the life I once led, there was no denying that I had to change how I approached my days.
But even still I vividly remember how after I regained the ability to walk a short distance, my mind screamed, “It’s time to get back to it!” I pushed myself to fill every moment with tasks, thinking I could just push my way back to my old life. And sure enough, my body rebelled. I’d go hard for a few days, then crash for a week, unable to move or function. It became a constant cycle of boom and bust. The more I ignored my body’s signals, the worse the setbacks became.
It took a lot of trial and error, but over time, I started to understand my limits, what I could handle in a day, and what was enough. I’ve learned that balance is everything. Now, on good days, I can clean the house, shower, and work a bit without overdoing it. I’ve found a pace that allows me to live without pushing myself to exhaustion. This isn’t about giving up ambition, it’s about being smarter with how I manage my energy.
Pain and illness already drain so many of your resources just to get through the day. Add in doctor appointments, treatments, and the emotional toll, and it’s easy to feel like your battery is constantly on empty. I have found that reducing the number of tasks on my list, instead of trying to tackle everything in one go to be so helpful. I try to focus on what truly matters and give myself buffer time to complete each task. It’s okay if not everything gets done in one day. The key to avoiding burning out isn’t only about doing less, it’s about doing the right things with the energy you have.
Remember, respecting your body’s limits isn’t a sign of weakness, but of strength. It took me a long time to accept that slowing down is not only necessary for healing, but it’s making room for a better quality of life, one where you can be present, even on the toughest days.
Taking Care of Yourself First: Prioritizing Mental and Physical Health
When dealing with chronic pain and illness, self-care becomes more than a buzzword. This journey requires a complete shift in mindset: taking care of yourself first, even when it feels selfish, is not just important, it’s essential for moving forward.
For ambitious people, this can be especially difficult. We often get caught up in work, chores, and the never-ending to-do list, leaving little to no energy for ourselves. But trust me, prioritizing your health will make you better at everything else you do. Whether it’s being a better partner, parent, friend, or professional, taking care of yourself first is the foundation.
We’ve all heard the saying, “Health is wealth.” But in practice, what does that really mean? For me, it’s focusing on five key areas: sleep, diet, exercise, mental health, and emotional health. Here’s how I’ve come to understand each role in managing chronic pain and illness:
- Sleep: Rest is Healing
For most people, the recommended amount of sleep is 8 hours a night. However, for those of us living with chronic pain, the need can be significantly greater. During a bad flare, I’ve found I need closer to 10–12 hours of sleep to feel functional the next day.
It may sound excessive, and I’ve wrestled with guilt in the past, wondering, “How will I get anything done if I’m sleeping that much?” But I’ve realized that without adequate rest, the pain makes it impossible to accomplish anything at all.
Sleep isn’t a luxury, it’s a necessity. If you’re struggling with sleep, try creating a calming bedtime routine, experimenting with sleep aids like weighted blankets, or speaking to a doctor about ways to improve your rest. - Diet: Fueling Your Body Wisely
Diet plays a crucial role in managing chronic pain. When my diet slips, I feel it: increased pain, fatigue, and an overall sense of unwellness. For me, adopting a gluten-free diet has been transformative. Gluten is known to exacerbate inflammation for some people, and cutting it out has significantly reduced my symptoms.
That said, every body is different. Some people find relief by cutting out dairy, following a Low FODMAP diet, or increasing their intake of protein and iron-rich foods. Experiment and find what works for you. The key is prioritizing whole, unprocessed foods whenever possible. And don’t forget to stay hydrated, drinking at least 64 ounces of water a day has made a noticeable difference for me. - Exercise: Movement is Medicine
Exercise can feel impossible when you’re in pain, but movement is essential. Unless a doctor has specifically advised against it, gentle activity can help prevent stiffness, improve circulation, and even reduce pain over time.
Start small, a short walk or a few stretches in bed can make a difference. If walking outdoors isn’t an option, tools like a walking pad (I found mine for around $100) can help you get in a few slow steps while watching TV.
Physical therapy has also been incredibly helpful for me. Over the years, I’ve completed eight rounds of PT, and each session provided me with valuable feedback and tailored exercises to keep me moving safely.
The key is to start small and stay consistent. Even tiny steps forward are steps in the right direction. - Mental Health: Finding Joy
Chronic pain and illness can take a toll on your mental health, so it’s essential to find ways to nurture your mind. Write down a few activities that genuinely bring you joy. Include options for both your at-home days and your better days. Then, make time for these activities just as you would for eating and sleeping. Neglecting this part of your health will only make the journey harder.
For me, at-home activities include sitting in the sun, playing RPG video games, or taking a long bath with music and candles. On good days, I love visiting a theme park for a ride or two (using a walker to avoid overexertion) or dining out at a restaurant (with seat pads and braces for comfort). These small moments of joy recharge me mentally and emotionally. - Emotional Health: Making Space for Yourself
Emotional health is equally important. Chronic illness can feel so isolating, so it’s important to make space for processing your emotions. Journaling, meditating, or talking to a trusted friend or therapist can help you navigate the emotional challenges of this journey.
Remember, it’s okay to grieve the life you once had. It’s okay to cry and to feel frustrated. These emotions are a natural part of adapting to a new way of living. Allow yourself to feel without guilt, you’re doing the best you can in an incredibly difficult situation.
Taking care of yourself first isn’t selfish, it’s the path forward. By prioritizing your mental and physical health, you’re not only improving your quality of life but also becoming better equipped to handle the challenges that come your way. Self-care isn’t just about bubble baths and face masks (though those are great too), it’s about listening to your body, respecting its limits, and giving yourself the tools to heal. Remember, you’re not alone in this journey, and it’s okay to take things one step at a time.
The Tools I Use for Chronic Pain: From Massagers to Supportive Gear
Managing chronic pain often feels like navigating a maze, trying to find the tools and strategies that actually work for you. Over the years, I’ve tried just about every tool, gadget, and method that seemed like it might help me function better. Some things I only used once, realizing quickly they weren’t a good fit, while others became absolute essentials that I now can’t function without. It’s a process of trial and error, and while it can be frustrating at times, the payoff of finding something that truly helps is worth the effort.
Below are some of my favorite tools and how they’ve made a difference in my daily life:
- Body Pillow
A body pillow is one of my must-haves for improving sleep quality. Chronic pain often makes it difficult to get comfortable at night, but using a body pillow for support can help align your spine and relieve pressure on painful areas. It’s especially useful for side sleepers or those with back pain. - Massage Gun
This has been a game-changer for tight muscles and knots, particularly after a long day or during a flare. A massage gun allows you to target specific areas of tension with different settings and attachments, giving you relief that feels almost like a professional massage. They’ve become more affordable recently and can be found at stores like Walmart or Amazon. - Back and Knee Braces
Supportive gear like back and knee braces have been incredibly helpful for reducing strain on joints and muscles. I use them during activities like cooking, cleaning, or walking to prevent overexertion and stabilize areas that feel weak or painful. - TENS Unit
A TENS unit (Transcutaneous Electrical Nerve Stimulation) delivers gentle electrical pulses to nerves through small adhesive pads placed on the skin. It’s a great way to manage localized pain, and I often use it for my back, hips, and shoulders. Many affordable options are available online, and they’re small enough to use while relaxing or out-and-about. - Sitting Back Massager
This is a lifesaver for days when I can’t reach a spot with the massage gun. These massagers often come with heating options, making it ideal for targeting back pain while I sit and work or watch TV. - Walker
For my particularly bad days, my walker has been invaluable. It gives me the stability and confidence to leave the house and stay active without worrying about balance or overexertion. Using assistive devices isn’t a sign of weakness, they’re tools that allow you to regain some independence. - Symptom & Pain Tracker
In addition to tools, I highly recommend keeping a pain and symptom tracker. This has been one of the most effective ways for me to understand patterns in my health and identify potential triggers. By tracking your day-to-day experiences, you can gain clarity on what might be causing or worsening your symptoms.
Here are some key things to track:- Pain Levels: Rate your pain on a scale of 1-10.
- Food and Water Intake: What did you eat? How much water did you drink?
- Weather: Changes in barometric pressure or humidity can often affect pain levels.
- Sleep: How many hours did you sleep? Was it restful or disrupted?
- Stress Levels: Note how stressful your day felt and any major events.
- Overall Mood: Write down how you felt emotionally.
- A Journal
Journaling can also be a helpful outlet for processing the emotions that come with chronic pain. It’s a safe space to express frustration, sadness, or even celebrate small victories. Chronic pain and illness are much harder than anyone who hasn’t experienced them can imagine, so give yourself grace and use tools like journaling to lighten the mental load.
While the tools and strategies I use may not work for everyone, I encourage you to experiment and find what helps you the most. Chronic pain requires a personalized approach, and no two journeys look the same. The goal is to make life a little easier, whether that means easing physical discomfort, improving your sleep, or simply giving yourself a moment of peace in the midst of it all.
If there’s one takeaway, it’s this: don’t hesitate to invest in yourself. Whether it’s a new gadget, a supportive device, or a simple notebook for journaling, these small efforts can make a world of difference.
Navigating the medical system can be a daunting and frustrating experience, especially when you’re dealing with a chronic illness or pain. One of the biggest challenges, particularly in the U.S., is the limited time we get with our doctors. In my own journey over the past three years, I’ve seen countless doctors, but most of my appointments last only about 5 minutes. That’s not nearly enough time to dig into complex issues or explore all the aspects of what you’re experiencing.
Couple that with the difficulty of getting appointments, often having to wait months to see the same doctor or being shuffled from one specialist to another and it’s easy to feel like you’re not being fully heard. But despite these challenges, one thing I’ve learned is that you are often the best person to advocate for your health. No one knows your body like you do, and your persistence can be key to getting the answers you need.
Being proactive and prepared for my appointments has made all the difference in my journey. Over time, I’ve discovered that doing my own research and bringing it directly to my doctors has helped me make the most progress. Rather than relying solely on them to figure it out, I take charge of my own care by keeping detailed logs of my symptoms, researching potential diagnoses, and coming prepared with information to discuss.
Here are some steps that can help you make the most of your doctor visits:
- Keep a Symptom Log
Start by keeping a detailed record of your symptoms. Track things like pain levels, fatigue, what you eat, stress levels, and anything else that seems relevant. Note any changes in your symptoms, their duration, and what seems to trigger or alleviate them. This can help you identify patterns that may not be immediately obvious. - Do Your Research
When you’re dealing with chronic symptoms, it’s tempting to hope your doctor will have all the answers, but it’s important to take an active role in researching potential causes or diagnoses. While doctors are experts, they may not have the time or resources to dig as deeply as you’d like into every aspect of your condition. Take the time to research your symptoms, common conditions related to your pain, and possible treatments. This empowers you to have informed discussions and bring new ideas to the table. - Create a One-Page Document
Once you’ve gathered all your research and symptom logs, organize it into a clear, concise document that you can bring with you to your appointment. With the limited time you have in your appointment, this document helps ensure you don’t forget anything important and helps keep the conversation focused. This should include:- A list of all your symptoms and their severity
- Medications you’re currently taking (and their dosages)
- Any tests or treatments you’ve already tried and their outcomes
- Key points you want to make with the doctor (such as your concerns, what you’ve observed, or potential treatments you’d like to explore)
- Any specific questions you have for the doctor
- Advocate for Your Care
I can’t stress enough how important it is to advocate for yourself. Unfortunately, there’s still a stigma around chronic pain and illness, and at times, it can feel like your concerns are dismissed. But if you’re in pain or experiencing symptoms, it is real. Don’t let anyone — whether it’s a doctor, a family member, or a friend — tell you that it’s “all in your head.” Trust your body, and never feel guilty for seeking help or asking for the care you deserve.
The journey to finding the right diagnosis and treatment can be long and filled with uncertainty, but your persistence is key. By keeping a detailed log of your symptoms, doing your own research, and advocating for your care, you can empower yourself to navigate the medical system more effectively. Remember, you are your best advocate, and the right doctor is out there, even though sometimes it just takes a bit of persistence to find them.
Taking Time: Recovery Isn’t Immediate
One of the most valuable lessons I’ve learned on my journey with chronic pain is the importance of giving myself permission to take the time I need, whether it’s for rest, recovery, or navigating setbacks. Healing from chronic pain or complex health issues isn’t something that happens overnight. It’s a long-term challenge that requires patience and self-compassion.
Chronic pain isn’t something a single treatment can fix, and finding answers can take time, especially if your condition isn’t easily diagnosed. Unfortunately, many of us — particularly women — face dismissive doctors or unclear test results, which can make the process even more frustrating.
You may experience countless tests, setbacks, and moments of hopelessness before finding clarity. But during these times, it’s essential to remember that your pain is valid, and your journey deserves understanding, not judgment.
Setbacks are inevitable and can feel like you’re moving backward, but recovery isn’t linear. There will be highs and lows, and it’s okay to take a step back to rest and recharge when you need to. Giving myself grace during difficult times has been crucial for my well-being. Taking unexpected days off or canceling plans to focus on health isn’t giving up, it’s giving myself space to heal.
Also, if a doctor ever tells you to give up, do not let their words discourage you. I’ve been told the same, but I refuse to accept it. Finding solutions takes time and persistence, and setbacks are part of the process. The answers are worth seeking, and it’s okay to take breaks along the way.
Ultimately, recovery is about more than just physical healing, it’s about protecting your mental and emotional well-being, too. Be patient with yourself, give yourself permission to rest, and allow your journey to unfold at its own pace. Healing takes time, but every step forward is a step worth taking.
Not Giving Up: Staying Resilient
Living with chronic pain and illness is an emotional rollercoaster. It’s a constant cycle of hope and frustration that affects every aspect of your life—your body, mind, relationships, and daily routine.
There will be moments when it feels like too much, when the pain is overwhelming, or yet another doctor’s appointment leaves you feeling defeated. I’ve had countless days like that, where I thought, “I can’t do this anymore.” But I’ve also learned that those moments don’t define me, they’re just part of the process.
Chronic pain is one of the hardest challenges you may face. The truth is, it may never completely go away, and accepting that reality is tough. But even on the darkest days, it’s important to remember that you are stronger than you think. Chronic illness demands resilience, but even the strongest people need a break. Feeling like giving up doesn’t mean you’ve failed, it just means you’re human.
When those moments hit, I’ve found it helpful to give myself space to breathe instead of trying to push through or giving in to despair. Resting, stepping away, and letting myself take a break have been some of the most powerful tools for staying resilient. It’s okay to pause and recharge. It’s okay to admit that today is hard, but tomorrow is a new chance to keep moving forward. One step at a time.
Resilience doesn’t mean never feeling defeated, it means allowing yourself to feel those emotions without letting them consume you. When you rest and come back to the fight, you’re showing strength. Chronic pain teaches you to adapt, to endure, and to keep going, even when the path ahead feels uncertain. Take it one day at a time, and never underestimate your ability to rise again.
Crying is Okay: Emotional Expression and Acceptance
Living with chronic pain is incredibly difficult, and it’s okay, necessary even, to allow yourself to feel the emotions that come with it. What you’re going through sucks. It’s frustrating, exhausting, and unfair, and bottling up those feelings won’t make them go away. In fact, I’ve learned that allowing myself to cry, grieve, and release those emotions has been one of the healthiest ways to process the pain and keep moving forward.
Even now, three years into my journey, I still cry often. I’ve found that crying for catharsis is much different than giving in to despair. A quick cry can feel like hitting the “release valve” on all the grief, frustration, and physical pain that build up over time. Sometimes, I cry because I’m mourning the life I used to live or because the simplest tasks, like taking a shower, are utterly exhausting. Other times, I cry because the pain feels relentless and overwhelming.
And that’s okay. Let yourself cry when you need to. Whether it’s a quick cry to clear your head or a long, messy sob session in a warm bath with a glass of wine, letting those feelings out can be freeing. Crying doesn’t make you weak, it helps you process the grief and frustration so that you don’t get stuck in it.
The key is not to let those moments of release spiral into despair.
Cry, feel what you need to feel, and then keep going. Wipe your tears, take a deep breath, and carry on with your day. Expressing your emotions is not a sign of defeat, it’s an act of strength, a way of acknowledging what you’re going through while refusing to let it define you.
So cry when you need to, and cry however you need to. Then, when you’re ready, pick yourself up and keep moving forward.
No Shame in Chronic Pain: Letting Go of Guilt
There’s a lot of stigma surrounding chronic pain and illness. Unless someone is experiencing it firsthand, it’s nearly impossible for them to fully understand what it’s like. Unfortunately, this lack of understanding often leads to unsolicited advice, judgment, or well-meaning but misguided suggestions about how you should feel or what you should be doing.
These external pressures, combined with our own internalized expectations, can make it easy to feel ashamed, inadequate, or even guilty for what we can no longer do. I’ve wrestled with these feelings myself.
When my chronic pain first began, I often felt like I was letting people down or somehow failing because my body needed extra help. I’d apologize to my partner, worrying that I was embarrassing him when I used a walker in public or felt like a burden when I needed assistance. I felt self-conscious as a 33-year-old woman relying on a cane or walker just to make it through the grocery store.
But over time, I’ve tried to realize that this shame and guilt are wasted energy. Your pain doesn’t diminish your worth. Living with chronic pain doesn’t make you weak or less capable, it makes you resilient, adaptable, and human. You are worthy of time, attention, and respect, including from yourself.
Yes, there will be people who don’t understand. Some may judge or think differently of you, and that’s an unfortunate reality. But it’s not your responsibility to carry the weight of their opinions. Your body has unique needs, and honoring those needs is not something to apologize for. Life becomes so much easier when you fully embrace yourself and your reality, regardless of what others think.
I’ve also found that most people, especially strangers, are kinder than we often give them credit for. Out in public, people are usually indifferent to my cane or walker or, more often than not, they’re happy to lend a helping hand or offer a kind word.
Letting go of guilt and shame doesn’t happen overnight, but it’s worth the effort. Remind yourself that you’re doing the best you can with the hand you’ve been dealt, and that’s more than enough. You don’t need to justify your pain or your needs to anyone. You’re human, and you deserve grace, understanding, and compassion, including from yourself.
How Chronic Pain & Illness Changes Your Life: Adjusting Expectations and Embracing Change
Looking back over the past three years, I feel like an entirely different person than I was before chronic pain became a part of my life. That’s the truth of long-term health issues: they change everything. How you see the world, how you live, how you feel about yourself, and nearly every aspect of life shifts in response to the reality of chronic pain. Some of those changes are undeniably difficult, but others can be unexpectedly meaningful.
When my journey with pain first began, I heard someone ask, “What has your pain done for you?” At the time, I thought, “Absolutely nothing!” I remember sobbing into my pillow, feeling like there was no possible silver lining. But looking back now, I realize that my pain has, in some ways, shaped me into a stronger, more grounded version of myself.
Mentally, I’ve grown so much tougher. The small things that used to stress me out or make me anxious barely phase me anymore. I’ve conquered fears, like my fear of getting blood drawn, that once seemed impossible to face. Obstacles don’t knock me down like they used to, and I’ve learned to truly savor the good moments. I call them “glimmers”, those little bursts of joy throughout the day that might otherwise go unnoticed. A warm cup of coffee, the sunlight streaming through the window, or a quiet moment with my cat (Fat Baby). I no longer take those moments for granted.
Pain has also forced me to slow down and reevaluate what truly matters. I’ve stripped away the fluff and distractions, leaving only the essentials: the people I care about, the goals I want to achieve, and the small joys that keep me going. It’s been a lesson in simplicity and clarity that I never anticipated but deeply value.
More than anything, pain has made me more empathetic. I now better understand that someone could be silently battling their own demons, invisible to the outside world. I’ve learned not to judge others too quickly and to approach everyone with kindness, knowing they might be carrying a burden I can’t see.
Yes, chronic pain will change you. It will change how you live your life, and it may even change who you are. But that’s okay. Growth often comes from the most unexpected places. The strength, resilience, and perspective you gain through the process are invaluable. You’ll emerge tougher, wiser, and more in tune with what truly matters.
It’s not an easy journey, but it’s one that can teach you to embrace change, let go of what no longer serves you, and find joy in life’s simplest moments. Your pain doesn’t define you, but it does have the power to shape you into someone who can handle just about anything life throws your way.
It Will Be Okay: Reassurance for Those Who Understand
Even if it doesn’t feel like it right now. Even if the pain, sickness, or frustration never fully goes away. Even if your life doesn’t look the way it once did—I promise you, with time, things can get better. It may not always feel like it, but you can find moments of peace, joy, and strength. Life can still be meaningful, even in the face of chronic pain & illness.
It’s okay to feel overwhelmed. It’s okay to grieve what you’ve lost. But you are not alone in this. There’s a community of people who understand, who have been there, and who are walking a similar path. I want to remind you that even on your hardest days, there are others who see you, who hear you, and who believe in you.
This journey isn’t easy, it can be lifelong and often feels unfair, but it doesn’t define you. You are more than your pain. You are strong, resilient, and worthy of the good moments, no matter how small they seem. Take life one step at a time, giving yourself grace when things feel heavy and celebrating the victories, no matter how tiny they may appear.
Finally, I’d love to hear from you. What self-care practices have made a difference in your journey? What has helped you find those little moments of light? Let’s connect, share, and support each other.
You’ve got this. It will be okay. One day, one moment at a time.
