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Are you one of the many people who have recently received a chronic illness diagnosis? I can relate. When I was diagnosed with Idiopathic Intracranial Hypertension, I left the doctor’s office feeling overwhelmed and unprepared. The lack of information and support left me with countless questions and uncertainty about the changes that lay ahead for me.
Rather than being given a comprehensive understanding of my condition and its potential impact on my life, I was simply handed a prescription and sent on my way. I felt lost, unsure of how to process this new reality and the ways in which it would change me.
Looking back on that moment in 2018, I now know there are 15 important things I wish I had known when first facing a chronic illness diagnosis. I want to share these insights with you, in the hopes that you can find the emotional support and understanding that I longed for at the time of my diagnosis.
And even if you have been living with a chronic illness for some time now, I hope that this post can offer you a sense of camaraderie and inspiration as you continue to navigate and thrive through life with your condition(s).
Disclaimer: While I offer tips for maintaining wellness while dealing with a chronic illness, I’m not a licensed medical physician, psychotherapist, or psychologist, and I’m not offering medical or psychiatric advice.
For my full disclaimer policy, go here.
The 15 Things I Wish I Knew
Being diagnosed with a chronic illness can be incredibly overwhelming and life-changing. Suddenly, your body and your future may feel uncertain. As you adjust to this new reality, it’s important to have the right support and mindset. Here are some key things to keep in mind as you navigate life with chronic illness:
1. People mean well, but it’s okay to be frustrated.
- When you share your diagnosis, you may hear well-intentioned phrases like “I hope you feel better soon.” While these words come from a place of kindness, they can be difficult to hear when your illness may never truly go away. It’s understandable to feel frustrated by these comments. Finding supportive friends who understand the complexities of chronic illness can help.
2. Connect with others who truly understand.
- Finding understanding and empathy for the daily struggles of living with chronic illness can be challenging. While loved ones offer support, the full extent of its toll may be difficult for them to grasp. This is where the power of connection comes in. Having a network of “spoonie” friends – those who also battle chronic illness – is not just desirable, but essential. These friendships provide a unique understanding and validation that can only come from shared experiences. Beyond emotional support, research shows that strong support systems improve health outcomes. By joining online groups, attending local meetups, or reaching out to others, individuals can find a sense of community and belonging that enhances their well-being. In summary, connecting with other spoonies offers validation, emotional support, and a sense of belonging crucial for navigating life with chronic illness.
3. Advocate for yourself.
- As you navigate medical care, remember that you are your own best advocate. Take the time to educate yourself, delve into research, and don’t hesitate to voice your concerns if you find yourself at odds with your doctors. Remember, it’s perfectly acceptable to seek out a new medical team if your current one isn’t meeting your needs. While the process may be draining, the peace of mind that comes with finding a team that truly listens to you and respects your concerns is invaluable and well worth the effort. As you advocate for yourself, don’t underestimate the importance of keeping thorough records of your medical history and symptoms. These can be invaluable tools in ensuring that your healthcare providers have a comprehensive understanding of your condition and can tailor their care accordingly. Remember, your voice matters, and finding the right medical team that prioritizes your well-being is essential in navigating the journey of managing your chronic illness effectively.
4. Your self-image may change, but it doesn’t have to be permanent.
- A chronic illness can undoubtedly bring about shifts in both your abilities and your self-perception, challenging the very essence of who you are. Yet, it’s essential to recognize that these changes do not have to become the sole defining factors of your identity. Affirmations can help shift your mindset and empower you to embrace your worth and resilience. They serve as powerful tools in reshaping your mindset, allowing you to acknowledge your inherent worth and cultivate a sense of resilience in the face of adversity. By incorporating affirmations like these ones created specifically for those with chronic illness into your daily routine, you can gradually shift your perspective, embracing the full breadth of your capabilities and strengths. Remember, you are far more than your illness, and by nurturing a positive mindset, you can reclaim agency over your narrative and thrive despite the challenges you may encounter.
5. Be prepared for change.
- Amidst the unpredictability of chronic illness, there’s a profound opportunity for growth and self-discovery. Each twist and turn in this journey presents a chance to learn more about ourselves and our capabilities. By embracing the diversity of experiences within the chronic illness community, we foster a culture of understanding and support, empowering one another to navigate the challenges with grace and resilience. Staying present in the moment allows us to find joy and gratitude amidst the ups and downs, reminding us that every step forward is a testament to our strength and courage.
6. Your illness diagnosis doesn’t define you.
- Receiving a diagnosis is undoubtedly a rollercoaster of emotions, from the relief of understanding what’s been going on to the uncertainty of what lies ahead. It’s crucial to remember that while a diagnosis is a part of your story, it doesn’t define who you are as a person. Your journey is multifaceted, filled with ups, downs, and everything in between. Embrace the complexities of your experience, and know that you are worthy of love, support, and understanding, regardless of any labels or diagnoses.
7. Focus on the present moment.
It’s completely natural to feel overwhelmed by fears and uncertainties when it comes to your illness. However, getting lost in the “what-ifs” can often overshadow the present moment. Redirecting your focus to the here and now can bring a sense of calm and clarity amidst the chaos. Check out this blog post for some spoonie-friendly ideas for effective self-care to help you get started on your mindfulness journey. Remember, you possess an inner strength and resilience that will guide you through even the toughest of times. Embrace each day as it comes, trusting in your ability to navigate this journey with grace and determination.
8. It is often said that focusing on your chronic illness is dwelling on the negative, but this belief is misguided.
- In a world where toxic positivity reigns supreme, it’s essential to recognize the reality of living with a chronic illness. While finding joy and hope amidst the struggles is vital, it’s equally important to acknowledge the difficult aspects of your journey. Ignoring the challenges posed by chronic illness would be a disservice to yourself and those who share similar experiences. Embracing a balanced approach allows for authenticity and growth, empowering you to navigate life’s complexities with honesty and resilience. So, let’s celebrate the highs, acknowledge the lows, and find strength in the beauty of our shared journey.
9. Chances are, your diagnosis will come with comorbidities – additional conditions caused or worsened by your primary illness.
- Navigating the web of connections between symptoms and their underlying causes can be a daunting task for anyone adjusting to life with a chronic illness. While not everyone may experience this complexity, it’s crucial to remain vigilant and informed about potential changes in your health. If you observe new symptoms or variations in your condition, don’t hesitate to reach out to your healthcare provider for guidance and support. Remember, your proactive approach to managing your health is key to ensuring the best possible outcomes on your journey.
10. People will offer unsolicited advice and swear that drinking more water, doing yoga, taking supplements, using essential oils, or seeing a certain practitioner will cure your illness.
- Setting boundaries is not only acceptable but essential when it comes to navigating well-intentioned advice from others. While friends and family may offer suggestions with the best of intentions, it’s important to remember that their insights may not always align with your individual experience or medical needs. While exploring various suggestions as part of a holistic wellness plan can be beneficial, it’s crucial to recognize that there is no universal solution for managing rare and chronic conditions. Embracing the uniqueness of your journey allows for a personalized approach to self-care and treatment, empowering you to make informed decisions that prioritize your well-being.
11. Managing your symptoms and ensuring your safety may require giving up activities you enjoy.
- Personally, it meant relinquishing my full-time job, stepping away from singing in the choir for a few years while I adjusted to living with IIH, and giving up driving to prioritize my well-being & safety and minimize symptom triggers. While it may take time to find the right balance for you, letting go of activities that exacerbate your symptoms can ultimately be empowering. By eliminating potential triggers, you create space for more joy and ease in your life – and isn’t that what truly matters in the end? Remember, prioritizing self-care is not selfish; it’s a necessary step towards living a fulfilling life with chronic illness.
12. It’s okay if you don’t see any silver linings.
- In fact, the pressure to find the bright side can sometimes worsen the experience. Living with a chronic illness presents immense challenges, and it’s normal to feel frustrated or upset about it. If you find yourself struggling with long-term depression or mental health concerns following your diagnosis, reaching out to a licensed professional for support is a proactive step toward healing. Remember, it’s essential to prioritize your mental and emotional well-being throughout your journey with chronic illness.
13. You may find that you have less in common with those who do not have chronic conditions.
It’s common for those without chronic illnesses to struggle to grasp the daily realities of living with one. This can sometimes lead to feelings of isolation or misunderstanding in your relationships. While this can be disheartening, it’s important not to lose hope. Finding solace and understanding in friendships and support groups with individuals who share similar experiences can be immensely comforting. Luckily, the internet provides a valuable platform for connecting with others facing similar challenges, offering a sense of community and solidarity that can help ease the burden of living with a chronic illness. Remember, you are not alone, and there are others out there who understand and empathize with what you’re going through.
14. No amount of preparation can fully prepare you for a life-changing chronic illness diagnosis.
Despite any preparation or research you may do, receiving a chronic illness diagnosis can still be a profoundly shocking experience. Each person’s journey is unique, so it’s essential to determine what approach feels most supportive for you. While preemptive research can offer valuable insights, it’s important to recognize that it won’t entirely mitigate the emotional impact or challenges that accompany a diagnosis. Remember, it’s okay to seek support and take the time you need to process and navigate this new chapter in your life.
15. Your diagnosis does not define your worth. You are a valuable member of this world, and nothing can change that.
Despite the shifts and adjustments that come with living with a chronic illness, your capacity to give and receive love and joy remains boundless. While the methods may evolve, your inherent purpose and value endure. My hope is that this post and blog serve as a comforting refuge for you, offering reminders of your worth and resilience whenever you need them. It’s essential to acknowledge that chronic illness can present significant challenges, but these challenges don’t diminish your inherent value as a person. Instead, they provide opportunities for growth and resilience as you navigate life with courage and determination.
As I wrap up sharing these 15 insights I wish I’d known when I was first diagnosed with my chronic illness, I’m reminded of how much we grow through the ups and downs of our journey. Each lesson learned has brought me closer to accepting and understanding my condition.
If you’re going through something similar, just know you’re not alone. The highs and lows shape us in ways we can’t imagine. As a way to offer support and strength, I’ve put together 10 affirmations specifically for those dealing with chronic illness. Just fill out the form below to grab your copy and let these affirmations be a source of comfort and guidance as you navigate your own path. We’re all in this together, finding strength in our shared experiences.
