Staying in a healthy relationship while battling chronic illness is no easy task, to say the least.
I’d like to speak from experience and share 2 tips that have been incredibly helpful to navigate through chronic illness while saving your relationship.
June 2019 – first time going outside without the wheelchair
#1. Avoid putting yourself in situations that are not fitted to what you can handle right now.
That’s so, so important.
Arrange your days, holidays, social outings etc. so that they work for you, no matter what your capabilities are at that moment. For 6 entire months I only saw 3 people: my parents and Tim. Literally. I couldn’t see anyone else as I was too weak and talking/ maintaining eye contact and holding my head was exhausting.
Later on after improving, I knew that I was able to go 5 min there… then that’s what I did. Really avoiding situations that I knew were too much for what I could handle was such a savior in our relationship, because it led to less frustration, less disappointment from people, less fights, and less pain. It took us 2 years of many fights to understand that.
We had many holidays planned when all I wanted to say to tim was “no way, I won’t go. I can’t.” as I was paralyzed by pain and fear. He always told me “we make it work. Always. It doesn’t matter if all we do is lay on a chair all day on the balcony of the hotel room. At least we are together”.
And so that’s what we did.
The low expectations really put a weight off my chest and I knew that the only effort i’d have to make was getting there, and that from there anything I could do with my legs would be great. We planned our holiday so carefully and we made sure that I never had to walk more than 50 meters which was the max I could do a few years back. Tim rented a scooter, a car, parked always right in front or dropped me in front of a place when he couldn’t park; all so I didn’t have to walk. We made it work with what we had.The rule was “Julie cannot walk more than 50 meters” and we never came back on this rule. It was a given, not something up for debate. We acknowledged that it was our reality, without associating emotions to it. We were indifferent to it. It’s like saying “the earth is round today”. Well yes, okay. You make it your present reality and you’re not really disappointed or debating about it are you?
And by setting this frame and taking this rule into account in all of our decisions, we ended up having a great holiday. All we had to do then was to relax, smile and enjoy ourselves.
#2. At some point you’re both going to have to fully accept the reality you’re in.
I know this, for the first 2 years Tim was in denial and he was telling everyone that I was getting better, when I truly wasn’t.
I was getting worse.
He just didn’t want to see that because he had so much pressure from his family/ friends (“you can’t be with a handicapped girl, come on, you’re young, what are you doing, and look at the way she’s supposedly healing, that’s nonsense”).
But after endless fights, tension, disappointments and stress, we soon came to realize that this wasn’t serving us at all.
We then started to see things as they were: okay so there is a wheelchair, I can’t shower alone, I can’t open the door to the delivery guy, I can’t clean the dishes, I can’t … (the list is long) – but that’s okay, because that is WHAT IS AT THAT MOMENT.
And we released all judgement and expectations towards that. It just became “that’s just the way it is so we embrace it with love and we make it work” (going back to rule number 1 and applying the frame).
That’s a concept that not a lot of people understand and we often got weird looks because of the way we looked (Tim pushing my wheelchair and me honestly looking skinny af from the muscle atrophy and my pale skin). People were looking weird at us because we were singing, laughing and making silly jokes all the time.
What seemed shocking to them is that we seemed happy and in love, when our situation clearly wasn’t optimal. But optimal for who? That’s a judgment and an opinion. Can you only sing and laugh when you’re beautiful, healthy and perfect? That everything is going well in your life? Nope. That’s a judgment and that’s a preconceived idea of what “should be”. Well fuck the should bes. Make your own rules.
Tell yourselves “this is our reality right now, let’s make the BEST of it and enjoy the ride”. And the magical thing about that is that when you start thinking and acting this way, suddenly your life does become easier, and everything seems to go just better.
Because you’ve fully accepted your reality and you’ve released that tension towards all your problems. Now you can breathe and focus on the positive in your life, and you’ll be surprised at how many things you can find.
If you constantly wait for a better tomorrow to be happy, then you might never be happy. When you accept that your reality is the way it is and release expectations, you start enjoying the NOW with all it has to offer.
When I look back at my old sick self a few month back, I feel so much love for myself. So much love for this skinny girl who tried so hard to let go of the disappointments, the should bes, the “I can’t”, the people whispering in her ear “but you should be better by now” or “this is never going to work”, the preconceived idea of society based on her gender and age that she should look and act a certain way…But despite all that chose to quiet her mind, open her heart, surrender and make her own rules.
I played the card I was dealt, with a smile, always. Because we are living in the now and the power of our thoughts shape our reality. We can choose what we focus on, and our energy goes there. So why not focus on the positive and give ourselves our best shot at improving?
And I learned to do that from Tim… he didn’t even know that he was teaching me, but he did. I watched him struggle, try to understand, stand up for what his heart was telling him besides his own people saying otherwise. And he did that in the name of love, compassion and surrender. He transformed into such a wise and brave man from this, and I breathed his positive energy into me like a life force when I most needed it. At times when he is down, he sees me trying so hard and still enjoying the present moment with all the difficulties it entails, and he soaks up in that vibe as well.
Because we focus on the many blessings we have,
we focus on possibility,
we focus on magic,
and we focus on the power of love that gives us wings, and ultimately, that makes us fly.
A short video of what our holiday earlier this year (2019) looked like! It wasn’t easy pushing the chair through the paved roads of Portimao in Portugal… but we had a good laugh, made it work and really enjoyed ourselves 🙂