Life Update: Managing Health, Learning, and Self-Advocacy

This year, I’m focusing on getting my health back on track, working closely with my care teams to improve my daily routines, sleep, and overall well-being. Managing chronic conditions is complex, and while I’ve been lucky to have people in my personal life who support me—getting me to appointments, cooking meals, and helping me navigate everything—it’s still a long road.

One of my biggest struggles is sleep. Chronic pain, neuropathy, and Sjögren’s syndrome make it difficult, and while I can distract myself during the day with content creation, crafting, and study, nighttime is another story. The best way I’ve found to describe neuropathy is:

Imagine you’ve sat on an ant nest. They’re crawling all over you, and you’re desperately trying to brush them off. But because neuropathy is a nerve problem, you can’t brush them off. Then, your hands start burning and going numb.

Since I have new readers, here’s a quick rundown of my conditions:

My Diagnosed Conditions

• Sjögren’s syndrome – An autoimmune disease that primarily affects moisture-producing glands, leading to dry eyes, dry mouth, joint pain, and fatigue. It’s also linked to neuropathy, which affects my nerves.
• Neuropathy – A nerve condition that causes pain, burning, and numbness, especially at night.
• Functional Neurological Disorder (FND) – A condition where the nervous system has trouble sending and receiving signals properly, leading to movement issues, muscle weakness, tremors, and other neurological symptoms.
• Epilepsy – A seizure disorder that affects brain activity. Mine is managed with medication, but it’s always something I have to be mindful of.
• Traumatic Brain Injury (TBI) – I acquired mine as a child due to medical trauma. Fortunately, I had early intervention occupational therapy (OT), which helped me function at a higher level, but I still experience challenges with memory, processing, and fatigue.
• ADHD – A neurodevelopmental condition that impacts focus, impulse control, and executive functioning. It’s something I’ve learned to work with rather than against.

Managing Symptoms and Self-Advocacy

I know that diet and health are linked, so I’m doing some basic things like keeping a food diary to track symptom changes. However, I also had a stark reminder recently—if symptoms get worse, don’t just assume it’s a flare-up. If something feels off, it probably is. It’s always worth checking in with a doctor, or if you can’t get an appointment, a pharmacist. I’m lucky to have a doctor who listens and works with my care teams, but I know not everyone has that experience.

I’ve been researching Sjögren’s syndrome on Wikipedia, and it’s more serious than I initially thought. But I’m making an effort to learn about it and write about it here—especially since even some nurses have asked me, “What is that?” While I know I can’t cure it with diet, I can focus on strengthening my immune system overall to help me cope better.

Some phrases I’ve found helpful when advocating for myself in medical settings include:

• “Can you note down that you are denying me further testing?”
• “I have mitigated my stress, so my care team wants this investigated.” (This one is useful if you have a paid caregiver, though I haven’t needed to use it recently.)

The Importance of a Formal Diagnosis

Self-diagnosing can be helpful in the short term—it gives you a starting point and a sense of direction—but in the long run, it can do more harm than good. A formal medical diagnosis not only validates that something is wrong, but it also ensures you receive the right care, treatment, and accommodations.

I know firsthand that getting a diagnosis can be a long, frustrating, and expensive road. I wouldn’t have been able to get through it without the people in my personal life who made sure I got to appointments, followed up with doctors, and supported me through the uncertainty. While I recognize that not everyone has that kind of support, I truly believe that if you have the ability to pursue a diagnosis, it’s worth doing. A formal diagnosis doesn’t just bring relief—it can also unlock critical accommodations and access to care programs like the NDIS in Australia or PIP in the UK.

Learning at My Own Pace

I know some people might ask, “Why haven’t you read about these conditions before?” The reason is simple—health anxiety. When I read too much, I find that my symptoms feel worse, not better. It’s not an honest progression of the illness but rather a reaction to learning about worst-case scenarios.

This year, I’m taking the time to learn about my conditions at a pace that works for me. I want to be informed without overwhelming myself.

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Final Thoughts

This post reflects where I am right now—managing my health, learning more about my conditions, and continuing to advocate for myself. It’s not easy, but having the right support and a formal diagnosis makes a difference. If you’re struggling with something that doesn’t feel right, trust your instincts and push for answers. It could change everything.

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