As this past May marked the 4th anniversary of my diagnosis with Idiopathic Intracranial Hypertension, I’ve found myself reflecting a lot on my experience with getting a diagnosis. I’ve also been reflecting on the major life lessons I’ve learned from living with Idiopathic Intracranial Hypertension.

In case you missed my announcement in last week’s post, September is Idiopathic Intracranial Hypertension Awareness Month, and for the entire month of September, I’ll be focusing on this rare & chronic condition.

Disclaimer: While I talk about my own experience, and information based on my own research, and 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.

I consider myself fortunate in the sense that before my diagnosis, I already had a strong background in self-awareness and reflection thanks to my yoga teacher training and practice. I truly believe that if it wasn’t for the ability to separate my true nature or Higher Self from this illness and to reflect on the needs of my body and mind – as well as the ability to advocate for myself and set boundaries when needed – I wouldn’t be doing as well with things as I am today.

Because of my personal growth work and daily practices, I’m able to sort of make being sick my spiritual practice and to see it as a teacher and guide. I allow it to tell me when to rest, what to focus on, where I’m strongest, and what needs work. And while I know that the last 4 years have indeed taught me a lot, I’m still learning and growing more every day.

In this blog post, I’m sharing the biggest lessons my chronic illness has taught me so far. It’s kind of like an anniversary review. Maybe I’ll do this every year if others find it helpful!

Keep reading to get the details!👇‍

Before we dive into those 5 major lessons I learned from living with Idiopathic Intracranial Hypertension, let me tell you more about how I got here…

One day about 4 years ago, I was diagnosed with a chronic neurological condition called Idiopathic Intracranial Hypertension (IIH, also known by the now outdated name, Pseudotumor Cerebri). I was forced to slow down and reevaluate the things I was prioritizing at the time and do determine how I was going to let this diagnosis affect me, my life, and my goals.

At that time in my life, I was working in the fast-paced financial industry as a both customer service representative and an account representative for employer-sponsored retirement plans. I had already dabbled with starting my own business as a Virtual Assistant, but as my content became more and more like the type of advice you’d get from a Life Coach, I realized that was my true calling. Since I was dealing with burnout myself, that’s what I decided to focus on.

And, as it tends to happen, the more and more I learned about burnout and began to adjust to living with idiopathic intracranial hypertension the more and more I realized that I was experiencing it intensely. This fact, along with a lot of other things like failed treatments, and just the physical overwhelm of trying to keep up the same pace while being chronically ill began to take its toll.

So, in August 2018, I took a leap of faith and quit my full-time job with no backup plan. I had a few leads but no real idea of what my career path – or life in general – would look like now that I chose to make listening and caring for my body a priority. I was fortunate enough to have some retirement funds to use to balance us out financially while I figured it out. Luckily, I was able to find a part-time remote job and was working again within a few months – just when the funds were due to run out! 

I also enrolled in a Life Coach Training program and set out to make this the main focus of my career path, while the part-time just was just there to help get the bills paid. While the timeline hasn’t quite been as brief as I was hoping, I’m so grateful to have the ability to work while living with Idiopathic Intracranial Hypertension in a way that honors my needs on all levels.

It’s definitely been a journey from pushing myself to learning to slow down and put my body first.

But as challenging as it’s been at times, I’ve learned a lot about myself in the process. I’ve also learned a lot about what it means to live with Idiopathic Intracranial Hypertension in a society that’s really centered on healthy bodies, and how ableism is so inherent in our culture.

And like the quote above describes, it was like my body breathed a sigh of relief. I truly believe that even though I still have difficult days, if I wasn’t in the practice of listening to and honoring my body, I would be struggling so much more.

While I’ve definitely learned more than 5 meaningful lessons over the last 4 years of living with IIH, below you’ll find the 5 major life lessons that have had the most impact on me.

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5 Major Life Lessons From Living With Idiopathic Intracranial Hypertension

• Self-compassion – 
  • Without self-compassion, I would still be pushing myself to do things that my body and mind just aren’t capable of doing anymore. It also helps me recognize my own suffering and reminds me to treat myself gently.
• Patience – 
  • Living with Idiopathic Intracranial Hypertension – or any chronic illness for that matter – requires a lot of patience. From waiting for doctors’ appointments to waiting for flares to end to having patience with ourselves because things take us a little longer now than they used to – patience is crucial to the way we can still thrive while chronically ill.
• Self-Love – 
  • I know having self-love can seem easier said than done – especially when chronically ill. But by learning to show ourselves the same grace and gentleness we’d show others in our situation, we’re better able to care for ourselves and ensure that our needs get met.
• Boundaries – 
  • When we’re living with a chronic illness, we have to learn to set strong & healthy boundaries to protect our energy and health. And we have to learn to be able to resist spending time with those who don’t honor our boundaries as a means of self-preservation.
• Adaptability –
  • They say the only constant is change, and this is especially true with chronic illness. We never know when a flare will hit, and our ability to be adaptable to our ever-changing energy & pain levels, and needs, really affects how we experience living with chronic illness.

I’m by no means a pro at any of these lessons, that’s for sure!

They call it a personal growth “practice” for a reason, right? But what I can say for certain is that allowing myself to stay open to whatever lessons chronic illness has to teach me, it makes the journey a little more bearable. And by sharing these lessons here, I hope they can add some comfort and ease to your journey through chronic illness, too.

If you’re looking for an easy way to add some personal growth to your chronic illness life & maybe experience some more ease, too, you’ll love the 10 Chronic Illness Affirmations printable that I’ve created. 

I left the toxic positivity out, and it’s 100% absolutely free! Just pop your info into the form below and check your email for your copy.

Until next time,

Do you struggle with intrusive thoughts

about living with chronic illness?