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A Message to My Younger Self as Someone with PKD

If it was possible to go back in time, I'd have a lot to say to my younger self.

As a teenager, I was diagnosed with Polycystic Kidney Disease (PKD), and I was plagued with worry, fear & overwhelming anxiety regarding my future. I had so many questions, no idea what to do and a sinking feeling in my stomach.

What does this all mean?

That question was always top of mind.

I wished someone could look ahead for me and tell me exactly how it would play out. But even with some idea of how this disease progresses, it's impossible to predict the future. I am now 35 years old and it's taken a good, long while for me to come to terms with my PKD diagnosis. I've grown into a different person as I work to manage my emotions around this chronic illness.

The woman that I've become is stronger, more proactive & absolutely more optimistic. I do have my bad days, but overall, I feel much more at peace with my story compared to when I was in my 20s. So, to my younger self, I'd offer reassurance & a little bit of inspiration because I know that's exactly what I was missing.

Here's what I'd say:

You can continue to live your life in a way that makes you happy.

Whether you live with a chronic illness or not, life is short and it's meant to be enjoyed. Despite this disease, you will have plenty of adventures and you'll accomplish more than you could ever imagine at this point in your life.

This diagnosis is not the end of the world, even if it feels like it sometimes.

Follow your dreams and continue set goals as if nothing can stop you from achieving them. Of course there will be bumps along the way, but you will learn from these experiences—don't let them scare you off-course!

This disease doesn't define you but it's going to become an important part of your story.

It's not easy, but it does get better. You're going to learn so much about yourself throughout your journey and you'll soon feel proud of how far you've come.

As you work to prioritize your health, you'll start to feel more grounded and like you've got more purpose each day.

You can (and you will) make changes to your life in a proactive manner, rather than out of fear.

You will find empowerment.

Open up to your family & friends.

You're probably a little afraid to talk about any illness out loud. But I promise, other people will not change the way they view you if/when they hear your story.

Having PKD can be a lot to manage, emotionally, so please talk with your friends & family about it. There is no need to be ashamed. There is no need to feel embarrassed. People won't pity you the way you think they will, they will just want to love & support you.

This support is paramount.

Focus your energy on the things you can control.

You can't control this disease, but you can prepare your body to fight it. This realization can turn your life around.

Try aiming for a balanced diet that's rich in REAL food (with room for the other stuff, too!) Don't dive into a restrictive diet or feel coerced into eating a certain way because "you should", do what feels right for you & your body. If one dietary strategy doesn't work, you can always readjust and/or start fresh.

Stay active and have fun. Staying fit & healthy protects your body on every level and helps promote longevity & good mental health.

Remember that moderation in all things is the key. Party, explore, have fun, but listen to your body and prioritize your needs.

Find your balance and you'll find your peace.

Connect with other PKD warriors to help you find a sense of belonging.

You don't have to go through any of this alone.

Community is vital to your overall wellness so reach out to your local foundation, make connections online and/or join a support group.

You'll be amazed at how empowering it is to share your story with other people your age/at your stage. Even if you're naturally more reserved, I promise, this will benefit you in more ways than you know.

Find your people!

If you're not ready to give this any thought, that's okay, too.

I grappled with fear of the unknown for a long time. I internalized it all for years, thinking denial would protect me from what was to come.

Looking back, I now know that acceptance & empowerment is much stronger than fear.

There's a process you have to allow yourself to work through before you're ready to make the most of life with a chronic disease.

Trust the process and be patient with yourself as you find your way.

Interested in hearing more on wellness & lifestyle for those with PKD? There's lots more to come on this important topic, so please stay tuned.


Ciara Morin

Registered Holistic Nutritionist (RHN), real food advocate, PKD warrior & advocate


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