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September 11, 2013

Young & Sick: The Realities of Living with Illness. ~ Kayla Rubis

Photo: Tara on Pinterest.

My inspiration for writing this article came the other day, when my cousin asked me, “Are you writing this down?”

I feel like there is a piece missing these days in dialogue about health.

Everyone knows about cancer and diabetes. Everyone expects older people to get sick. As a young person who has an illness that not many people know about, it can be a lonely place.

What I have learned is that it is not just me out there. How refreshing would it be to actually talk about what it really is like on a day to day basis to have an illness yet still look young and vibrant and have the same aspirations and desires as other young people? I know that if I stay in a place of truth and vulnerability, that this journey I am on can be related to, by many.

So let’s talk about it. Let’s talk about dating in your 20’s and 30’s when you have an illness and not only do you have the normal insecurities as everyone else who is in the dating world, but now you have the added insecurity of not knowing how someone is going to respond to you when they learn you are unwell.

Let’s talk about the stares you get from older people when you sit down on the bench because you aren’t capable of standing any longer even though you look young, fresh and healthy. Let’s talk about how it feels when someone blames you for getting an illness when you are young because it must have been something you have done wrong; it must have been your fault to get an illness so young—only old people get sick. And, let’s talk about the judgements you get from the natural health world when everything they have suggested to you isn’t working—there must be something wrong with you, you must not have done enough, right?

Wrong.

Five years ago I was diagnosed with end-stage kidney disease. I have been vegan for 15 years and a granola-eating vegan, too, not a pasta-and-Oreo eating vegan, I have been doing yoga for over 10 years and I generally do my best to be incredibly mindful of my thoughts and intentions.

I did everything right. I still got sick. I used to feel so ashamed of this illness. How could I only be 26 years old and have this chronic illness?

I felt as though I had no one to relate to. Especially, since I have been a huge supporter of the natural lifestyles throughout my entire life.

I had tried everything to cure myself. Nothing worked.

I found that there is this very strong judgement out there from people who have never been sick and follow a natural health lifestyle. As a yoga instructor in particular, people look to us as examples of health and vitality. One can easily fall into thinking that there is no room for faults in that world, but how untrue this turns out to be.

How does a person who is young, looks healthy, and lives a very clean and vibrant lifestyle, navigate the health world? No one knows what to do with me. The western medical world thinks I am totally illogical. I have had nutritionists turn their heads sideways with mouths shaped into little o’s when I tell them that the parameters of how I eat fall under: vegan, gluten free, low soy, no processed food, no sugar, nothing fried and mostly raw.

The natural living world tells me I am out of balance, not in alignment, not clean enough, generally just not enough. (Honestly, if I have to hear one more time that if I just eat only raw food or change my vibration or take this supplement or that homeopathic I will get better, I am probably going to scream.)

It is a lonely and sad place when no one your age can relate to you. It is a shameful and scary place when natural medicine hasn’t worked and the only option left is medication and surgery.

Until, I learned that it’s not just me out there.

This is the point. Let’s talk about it. Let’s bring to awareness, that it is okay to be young, beautiful, vibrant and still unwell.

The other day, I was having tea with a woman who is quickly becoming a good friend. She has been a yoga instructor for years. She is vegetarian always and vegan sometimes. She has followed all of the “rules” of natural living and still, she is sick.

Her struggles fall under the mental health realm of things. She felt the same way I did. She told me that she used to say to herself, “If I only do more of this or less of that, I will get better.”

That’s what we had heard all of our lives. But, it didn’t work for her, just like it didn’t work for me.

At first, we thought there was something wrong with us, but what we have learned is there is something greater going on in this world that we still can’t explain. We have learned that we are all a fabric of something greater and that no one belief system holds the whole truth.

I have also discovered a very valuable gift: I have learned to allow myself to be vulnerable and tell the truth about who I am. Yesterday, at a vegan potluck I announced that I have kidney disease when a woman insisted I try her electrolyte-infused orange drink. I would have never done that in the past.

Let’s allow ourselves the magical gift of falling in love with ourselves all over again. Let’s allow ourselves to be honest about who we are and know that even though we have something wrong with one part of our body doesn’t mean it impacts who we are as people.

When I live my life from a place of truth and raw love, I can recognize that there are incredible people in the world who truly do not focus on this not-so-perfect part of me. I have learned that men still find me attractive and that when I allow myself to be vulnerable for even a moment, there will be some beautiful soul standing in front of me to remind me that I still have so much to offer in a relationship.

Even though I still feel as though many men would not want the extra hassle of dating a woman who will be unwell the rest of her life, there are some who see me for me and can still laugh with me and see energy in me that even I can’t see in myself, anymore.

When I stay in a place of grounded contentment I know that I have nothing to prove to anyone. I know that it doesn’t matter if the nutritionist doesn’t understand my diet choices because I feel a solid confidence that the choices I am making are contributing to the vibrancy that other people can still see in me.

I really know, in my general heart and solar plexus or “yes-feeling” area, that I don’t need to explain or compromise for anyone. I know that if they disagree, I can simply nod and smile and tell them that I am unwilling to betray myself by negotiating, and afterwards I will maintain feelings of peace.

I know that if I can be vulnerable enough to actually allow myself to feel the pain and the waves of emotion that come with this part of my life that there will still be people standing around me, even if they are strangers, who so badly want to support me in this.

There are still lessons that creep up every day. How can a woman who is used to being in charge, fiercely independent and who likes to be seen as a competent woman, allow others to do even the simplest task such as make appointments for her? Especially, when this woman knows that very soon she won’t even be able to take out the garbage or cook for herself.

I don’t have it all figured out, yet. And, guess what? That is okay because we don’t have it figured out.

The natural medical system and the western medical system do not have it all figured out, yet. The scientists and philosophers do not have it all figured out, yet. The spiritual gurus will be the first to tell you they surely don’t have it all figured out, yet.

So, we just take it day by day, reminding ourselves to live our lives and make our choices from the place of truth, love and trust that it is all unfolding perfectly for us.

If we are brave enough even for a moment to show our vulnerability, oh the blessings that appear before us will be astounding.

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Assistant Ed: Steph Richard / Ed: Catherine Monkman

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