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Why My Chronic Illness Makes Me Crave Stability

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Being a teenager or a child when you are diagnosed with a chronic illness can make the life before you were ill seem like a distant memory — the time when you were not always living in fear of a relapse or a flare up that leads to a string of bad days. All you can recall now is rushing to hospital appointments, swearing when you leave your tablets at home, and the erratic and bizarre side effects you deal with regularly.

I tend to be nostalgic for the years before age 17, when I didn’t worry about what was coming next in life. It didn’t matter if I didn’t have a plan; I was 16 for heaven’s sake. It didn’t matter as long I was having a laugh. I could give my heart away way too easily, spend days laid out on the sofa with no guilt in being lazy, and flick from one thing to the next with ease because if everything went a bit wrong, it was all good, because tomorrow was sure to be fine.

Nephrotic syndrome hit me like a bus. How can you be carefree when the uncertainty of an illness you are still trying to understand creeps into every aspect of your life? It is incredibly difficult to perform as part of a rock band when you’re carrying around a stone of water weight and can’t remember the chords because of brain fog. Trust me, I tried. I thought I was super punk rock, but illness complicated that a little. It’s harder to get up on stage and sing when you don’t recognize yourself.

Life can become volatile when chronic illness comes along. You don’t know what is going to happen to your body from one day to the next; every morning it is a shock if you wake up and feel good. It’s difficult to feel any sense of normality when you move from the positives of remission to the depression and unknown fate of relapse in 24 hours flat.

Instability is just a fact of life when you live like most of us do. People with a long-term illness tend to become consumed by the new way of life they have to lead. Life plans tend to be changed. Dreams tend to be put on hold while you get yourself back on your feet. Relationships change depending on whether the people in your life can handle the truth that you are changing, and life can pass you by.

Here’s where this article becomes a kind of love story — I feel sheer adoration for those who provide the stability I crave so much. My partner has been with me since this all started. He is the one who took me to the hospital when I was first diagnosed. Since then I will forever be grateful. He has never let me slip into feeling sorry for myself, never pandered to my anxiety over not being able to live a “normal” life. Instead, he keeps me strong and encourages me to hold my head up no matter what happens.

Instability is just part and parcel of my life, our life. But when it comes to our relationship, there is a sense of normality. No matter how I am feeling or what treatment I’ve faced, he will pick me up from work or stroll in the door at half 4 asking what is for tea. I have the stability of knowing we will argue like any couple and bicker constantly, but when it comes to the big things like treatments, he will never question my choices.

It took a long time for us as a couple to get the stage where things are stable; meeting as teenagers when I was first diagnosed is not an easy transition for anyone. We have grown into completely different people since we met, but he has been as much to thank for my every recovery as the medication. Don’t get me wrong, I am not saying things are always easy and I know romantic relationships are not what everyone needs, but I’m talking about any relationship that provides you with comfort and support.

Don’t deprive yourself of the things you want or crave in life because you don’t think they’re viable with a chronic illness. If you need stability, find it in your own way that works for you. No matter how bad the outlook is or how ready you are to give up the fight, one Sunday morning you’ll wake up and you’ll snuggle into the side of your favorite person, or call your best friend, and you’ll know that whatever comes next, you’re going to be OK.

Originally published: February 20, 2020
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