8 Must-Do Immediate Steps After Receiving a Rare or Chronic Illness Diagnosis

Read time 8 minutes

I wake, I breathe, I thank the Universe: You’ve walked beside me through agony, uncertainty, and the grace of healing.

When people ask me, “What was the first thing you did after being diagnosed with multiple chronic illnesses?” They aren’t just asking about medical steps.

They’re asking about survival. About resilience. About how I began to live again.

Let me tell them, I am not my lab results. I am not my diagnoses. I am a possibility. My story is still unfolding…….

These blogs aren’t just stories about symptoms and treatments. It’s about reclaiming identity, rebuilding hope, and learning to thrive with rare and chronic conditions.

My identity, my relationships, my dreams, and even my sense of time shifted dramatically. I didn’t just receive a diagnosis. I received a new reality.

This is about how I began to reclaim it.

The Moment Everything Changed

I still remember the day the diagnosis came in. It felt like someone had dropped a medical encyclopedia on my lap and said, “Good luck.”

Isaacs’ Syndrome? Never heard of it. Lyme disease? Isn’t that from ticks? Glaucoma? But I can still see fine. And then came the rest of the list: Membranous Glomerulonephritis, Blood Pressure issues, Frozen Shoulder, Diabetes, Eczema and Irritable Bowel Syndrome (IBS).

It was overwhelming. I felt like I was drowning.

I’m profoundly thankful to my family for their constant support and the lasting influence they’ve had on my life. During the turmoil, I was fortunate to hear a voice whispering: You have a choice. You can let this overwhelm you, or you can find a way through it.”

That whisper became my compass and altered the course of diagnosis.

The whisper came from a man who helped me discover a sense of sacredness.

He didn’t just listen; he taught me how to listen to myself. I practically learned how to navigate pain and confront fear. It wasn’t just a support, but an awakening. It didn’t erase my pain, but helped me carry it with more grace.

At first, everything felt sudden and unfamiliar, and I made quite a few mistakes along the way. But eventually, I found my footing by taking these steps, which proved to be incredibly helpful:

Step 1. It took a Lot to process the Episode, emotionally

• Though I felt shaken, lost, and heartbroken, I believed it was all part of the process and that in time, everything would settle.
• I shared my feelings with trusted family members to avoid isolation

Step 2. Understood What I Was Up Against

At first, I wanted to run from the information. I avoided pamphlets, dreaded searches, and felt like every new fact chipped away at my hope. But I quickly realized that ignorance wasn’t protection; instead, it was paralysis.

So, I began to educate myself. Not obsessively, but intentionally. I wanted to understand what each condition meant, how they interacted, and what my best options were.

Here’s a simplified breakdown of what I learned:

Condition What It Means Isaacs’ Syndrome A rare neuromuscular disorder causing continuous muscle twitching due to nerve hyperexcitability. Often autoimmune. Lyme Disease A bacterial infection from tick bites can mimic chronic fatigue and neurological issues if untreated. Glaucoma Increased eye pressure can damage the optic nerve and lead to vision loss. Membranous Glomerulonephritis A kidney disorder causing protein leakage into urine, potentially leading to kidney failure. Diabetes A chronic condition affecting blood sugar regulation, requiring lifestyle and medication management. Hypertension High blood pressure, often silent but dangerous, increases the risk of heart and kidney problems. IBS A gut disorder triggered by stress, food sensitivities, and nerve signaling issues. Eczema Chronic skin inflammation, often linked to allergens and emotional stress.

Step 3: Built a Specialized Care Team and Managed my Symptoms

I realized, when my body was in crisis, I didn’t have the luxury of waiting.

Some symptoms demanded immediate attention: pain, fatigue, vision changes, and skin flare-ups. So, I focused on relief first.

Understood My Needs

• Identified challenges of my condition (medical and lifestyle) and acted upon it

Started with a Core Team

• Family Care Physician: He was my central coordinator
• Specialists: Experts suggested by my family doctor for my rare conditions

Included my Personal Support System

• Family members, social connections, and friends
• Patient Advocacy Groups: This proved an extremely helpful exercise. This provided me with some unknown resources and guidance

I also started a health journal.

I tracked symptoms, triggers, and emotional patterns. This wasn’t just for my doctors; it was for me. It gave me a sense of control in a world that suddenly felt chaotic.

Here’s what my initial treatment plan looked like:

• Isaacs’ Syndrome: Immunotherapies like IVIG and medications like carbamazepine helped calm the muscle activity.
• Lyme Disease: I underwent long-term antibiotics and added immune support supplements.
• Glaucoma: Eye drops became a daily ritual, and I prepared for possible surgical options.
• Kidney Issues: Blood pressure control and immunosuppressants were key.
• Diabetes & Hypertension: I adopted a strict medication schedule and monitored my levels religiously.
• IBS & Eczema: I experimented with elimination diets, antispasmodics, and topical treatments.

To stay organized, I used pill organizers and medication reminder apps. It may sound simple, but these tools became lifelines. They helped me stay consistent, which is the cornerstone of chronic illness management.

I got family referrals to health specialists and visited them.

Step 4: Turned Fear into Curiosity

Research was quite helpful.

I stopped seeing my doctors as authority figures and started seeing them as teammates. I came to appointments with questions, not just symptoms.

• What are the latest treatments?
• Are there experimental options worth exploring?
• Could these conditions be interconnected?

Some may disagree, but I also learned that seeking a second opinion isn’t disloyal; it’s smart. Especially with rare conditions like Isaacs’ syndrome or complex kidney disorders, a fresh perspective opened new doors in my case.

Step 5: Connect With a Rare Disease Community to Build a Support System

Chronic illness can be isolating. But isolation is a symptom we can treat with connections.

Online Communities:

• Facebook groups for rare diseases
• Reddit threads on chronic illness coping
• Health forums with peer-reviewed discussions

Local Networks:

• Hospital wellness workshops
• Yoga and meditation classes tailored to chronic pain

Reached Out for Support in the time I needed it most:

In my journey of uncertainty, I knew I couldn’t walk it alone. And it was ok to ask for help.

I reached out not just for medical support, but for guidance. I thank my family for being there and making a huge difference. Whether it was sharing of resources, lending a listening ear, or simply being present, every support meant more than words can express.

Step 6: Explored Insurance and Financial Support

• My brother contacted my insurance provider to understand coverage for genetic testing, therapies, and travel
• He took the time to look into government support and nonprofit grants, even though the resources available were scarce

Step 7: Explored Safe Alternative Therapies

I began exploring these options fairly late into my treatment process.

Modern medicine saved me, but holistic therapies helped me feel whole again. I didn’t replace my treatments; I complemented them.

I don’t wish to get into the integrities, just touch base on them:

Ayurveda:

• Ashwagandha: Helped calm my nervous system
• Neem & Turmeric: Supported skin healing and reduced inflammation
• Diet: I followed anti-inflammatory meal plans that supported digestion and detox

Homeopathy:

• Natrum Mur. & Sulphur: Offered relief for eczema
• Carbo Veg. & Nux Vomica: Helped manage IBS symptoms

Of course, I always consulted my doctors before trying anything new. Safety first, especially with kidney and immune-related conditions.

Step 8: Build a Holistic Healing Plan

Please remember: Healing isn’t just about prescriptions. It’s about creating a life that supports the body, mind, and spirit.

Spirituality:

Living with a rare disease can be scary and confusing. For me, spirituality helped me feel calm and strong. When doctors didn’t have answers, I found comfort in prayer and quiet moments. Believing in something bigger than myself gave me hope and helped me feel less alone.

It didn’t fix everything, but it helped me heal inside in ways that medicine couldn’t.

Nutrition:

I focused on kidney and diabetes-friendly meals. Low-sodium, moderate-protein, and low-glycemic foods became staples. I added anti-inflammatory ingredients like ginger, berries, and omega-3s.

Movement:

I couldn’t do intense workouts, but gentle activities like stretching and tai chi helped with circulation and emotional release.

Mental Health:

After proper consultation, I did permutations and combinations with therapies. I have tried helpful therapies, including:

• Craniosacral Therapy
• Seitai (Japanese body alignment)
• Sound Healing
• Physiotherapy
• Iyengar Yoga, etc

I used meditation apps like Insight Timer and practiced breathwork daily. These tools helped me anchor my thoughts. They successfully processed the emotional weight of chronic illness.

Final Thoughts: Reclaiming My Life, One Step at a Time

Getting diagnosed with multiple chronic illnesses felt like waking up in a foreign land with no map. But slowly, I began to chart my course.

Here’s what I’ve learned:

• Knowledge is power
• Treat symptoms with patience
• Explore therapies that nurture, consider treatments from a holistic perspective
• Make space for emotions: they’re valid
• Community building: healing is communal

There are days when progress still feels invisible. But healing isn’t about perfection; it’s about perseverance. And every step I take, no matter how small, is a testament to my strength.

So, if you’re standing at the edge of your diagnosis, wondering what comes next, know this: you’re not alone. And your path forward begins with one brave decision. Also, please stop apologizing for being “too much.” Because we’re warriors, and the world deserves to witness that strength.

For more on my journey and resources for living with rare and chronic illnesses, visit ordinarilyrare.com.

Disclaimer

I’m not a doctor; these reflections are based on personal experience and do not constitute medical advice. Always consult your healthcare provider when exploring therapeutic options.