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7 Wonderful Things Lupus Has Taught Me

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There are so many ways that your life changes to encompass a chronic illness. Some are gradual and subtle over time and others hit you like a speed train out of nowhere. But when I take a moment to truly look back at the way my chronic illness, systemic lupus erythematosus, has shaped my life and who I am as a person, I realize it’s not all bad. There are these wonderful things that it has taught me. There are subtle ways that it has altered who I am as a person and shaped me into the young lady I am today, and for many of those I am genuinely grateful.

1. To respect and listen to my body.

It has taught me to appreciate the fact that my body is so busy day-to-day fighting this invisible battle to keep all my cogs and wheels turning away so that I can live my life. Who am I to ignore it when it tells me I need a rest, food or to simply take five minutes to recuperate?

Our bodies are incredible. It’s hard to come to terms with the fact that mine is my worst enemy, my greatest gift and probably the most honest thing in my life. If I’m tired or in pain, there’s no sugar coating it – it tells me. It relies on me as much I do it. It’s a mutual respect that as I grow into a young woman, I’m learning to value immensely. There are parts that I wish didn’t wobble and the odd ache that I ignore, but over all I have learnt that my body is my own personal warrior in the midst of its own battle. It deserves a hell of a lot more credit than I once gave it.

2. To be empathetic.

Sometime I worry that as people with a chronic conditions, we are so focused on making others understand that pain and struggles that we go through, that we forget to take the time to understand the pain and struggles of others. They may seem entirely different, less severe or fleeting in comparison, but that does not mean that it is any less valid.

Having a chronic illness has taught me that kindness and empathy are two of the most valuable things in this world. Having to live with fatigue means that when I see someone looking tired I genuinely feel for them. My heart is overwhelmed because I see that tired look in their eyes and I know what it means, which forces me to do whatever I can to help them get the light back into their eyes that tiredness steals away.

If someones in pain, I want to take their pain away. If I could take it upon myself I would. I’ve had seven years of learning to deal with pain, I’m a professional. I hate to see others struggle and know there’s only a limited difference I can make. This is why I tend to try and make people smile, or offer them the warmth of a hug. I know that it is these simple things that can help immensely.

Empathy is possibly one of the most prominent parts of who I am today, I am the “group mum,” the caring one that will put everyone else before myself. It’s because I know how it feels to be unwell or down and I wouldn’t wish that on anyone. Having a chronic illness means we have to be careful where we invest our energy, and for me, there is no better place to invest it in than being kind, thoughtful and empathetic to others.

3. That everyone has a story.

After living with an invisible illness that the majority of people in my life has no idea about, it made me realize that no one is ever simply how they appear. It has taught me to never assume that someone’s life is easy because they seem happy or they look healthy, because so do I. It has made me appreciate people in a whole new light.

I know how hard it is to let someone in. I’ve been there and built the walls, many of which I’m still learning to tear down. But when someone allows me in, when I make a genuine human connection with someone, I have learnt just how valuable that is. It probably makes me a seem a little odd because I want to know everything about them, I want to know the tiny things they think are insignificant because they never are.

Nothing about who you are as a person is insignificant. It’s those tiny things that make you who you are, so to allow someone to see them. Be a part of them. Doing so is braver than anyone ever realizes.

It also reminds me that I’m still “normal” too, I’m still a person just like them. I may have added complications, but that doesn’t mean I am any different at the core of who I am.

4. To focus on what I can do, not what I can’t.

I am 21 years old. I have suffered with lupus since the age of 14, yet there are so many things that I have accomplished in the last few years. I have lived in three countries, worked several wonderful jobs, met amazing people, revisited my love for theater and seen myself grow in ways I never imagined possible. The fact that I have the capacity to do these things is its very own miracle to me.

There are people who struggle with the exact same condition who can’t work, can’t travel and feel isolated and alone. This breaks my heart. So, I say again, who am I to throw away these chances that life has given me whilst I am still able to do them? That to me seems like an insult to every person who struggles with lupus who can’t do these things. And who knows, it could be many years down the track, or it could be tomorrow that my condition can alter my life again.

I may not be able to sustain working the way I like, I may not have the energy to go out, do the things I love or to see my friends. But the fact of the matter is that right now, I can. I focus on the fact that I can work almost a full-time week. I pay for it of course, but I still did it. I can travel to beautiful places in the world. I have to consider more than a healthy person would, but I can do it. If I think of the times where there were things I couldn’t do, or think of a future where there are things I can’t do, then I have already lost half the battle. The battle is day-to-day. Every thing I can do is a small victory I treasure.

5. That it’s OK to talk about it.

This one for me is a work in progress. It has taken me a long time to get to the place I am now where I can openly admit that I have a chronic illness and all that comes with it.

My lupus may have started as early as 11 years old when my thyroid gland stopped functioning. Being an 11 year old who was exhausted constantly, I was accused by classmates of being a “skiver,” someone who lied to skip school. This experience was something that stuck with me longer than I ever realized.

It’s not their fault. How on earth could 11 year olds ever comprehend that it wasn’t a simple issue?

I didn’t experience the kind of tired you get from staying up late to watch the end of your favorite movie, or from reading under the covers. For years, I couldn’t answer honestly when people asked why I was off school. All I wanted to say was that I was too tired, but that didn’t seem like enough of an answer. Eventually it became a matter of pride – I didn’t want to be seen as less capable than everyone else my age. I didn’t want to admit that I was struggling, that I didn’t feel like I was 16 when I woke up aching and tired. So, I stopped admitting it to others – and myself.

This came back to bite me. I pushed myself so far that I had one of the worst flare-ups I’ve ever suffered. I think it was then I really realized this illness is not something that will go away. It’s a part of who I am now, whether I like it or not.

I think it was then when I finally admitted it to myself and when I began to realize there was nothing to gain from not telling people the truth. It was like turning around and saying to them that I have blue eyes, when in fact, my eyes are brown.

Lupus, is a part of who I am, it’s in my DNA. Eventually I learnt that it’s OK to admit when I am having a bad day. It’s OK to tell people that I have a condition. Every day I get better about speaking openly about the fact that I do indeed live with a chronic condition. When I tell people now, they’re genuinely curious and want to know how it affects my life. Most want to know what they can do to help, others just listen, shrug their shoulders and move on. Either way, I’ve learnt that no one thinks any less of me for it.

6. To truly value my family and friends.

For years I struggled with the fact that I have “bad days;” days when I’m exhausted emotionally and physically. But it was the way this affected the people around me that caused this awful guilt that built up inside me. I would snap at my sister, who I adore, I would ignore my friends, barely send time with my family, cry for no reason and generally be what I felt was a horrible person.

I felt as if I should be able to ignore this. It’s not their fault, they don’t deserve to see me this way and be treated that way. But eventually I learnt that they understand far more than I ever gave them credit for. They are the people who have been there for me through all of this. They’ve seen the bad days, the good days and everything in between. They’ve sat in more hospital waiting rooms than I can count and yet they still love me unconditionally. They are the most important people in my life, they are my support network and there’s no one else in this world I’d rather have by my side.

My friends, the ones that genuinely got it, the ones that saw the bad days, they were my greatest asset growing up. They’d happily sit and watch movies on days when I didn’t feel up to leaving the house. They would be the ones to help on the rare days I needed to use a wheelchair and somehow they would turn my hurt pride into smiles and laughter in the most glorious way. Theres not a chance I would be able to handle my condition the way I do without them, and I am am so truly grateful to have them by my side.

7. To enjoy the little things and small victories.

As much as I hate to admit it, there are times when I have to rein in my big outlandish dreams and be honest with what I can achieve. Some I go for it anyway because I am stubborn, but others I try to compromise, such as running a 5k race for charity when my friends are running marathons. Or, feeling proud because I managed to drag myself out of bed on a tough day – when there are people who have been up for hours and achieved countless amounts.

More importantly, I try to look around at all the life that is happening around us… to sit on the beach and enjoy the sound of the waves, sharing a smile with a stranger or taking a moment to enjoy the stars.  Because I can do these things. I am here. I am at least semi-functioning, and this world is wonderful underneath all of the darkness that seems to trying its best to drown her out.

It’s that tiny act of kindness or a hug on a bad day. It’s being able to put a smile on someone else’s face. It’s about truly living in all its capacity because not everyone has that luxury. Not everyone can listen to the waves at the beach, or stroll through the park or enjoy their favorite food, their favorite song.

Living with a chronic illness has taught me to take nothing for granted because we all, chronically ill or not, live life on a tight rope. None of us are guaranteed an easy life or another day. Remember to enjoy the little things whilst you can because you never know when the day might come that you can’t.

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Originally published: July 27, 2017
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