OK, so it’s not great having an incurable, life-threatening, life-changing disease that can control your life and ambitions, affect your relationships and make day-to-day life a struggle. It actually sucks. It’s even worse when you feel like people don’t understand, which is a top complaint from anyone living with a chronic illness. It can affect your mental happiness as well as your physical well-being, and I see this from blogs I’ve read, vlogs I’ve watched, the occasional forum/Tumblr post, etc.
But.
Although I know these things help us all get frustrations off our chests, I’m a firm believer that if anyone focuses too much on the negativity in their life, they themselves will only feel negativity and that’s not healthy. I like to focus on the good aspects of things, and when you’re stuck with something for life, this is really helpful. So can good come from lupus? Only if you make it so.
Friends/Family Support
This I have found to be the most important, and it’s what has really helped me deal with the diagnosis. The blogs I follow give the impression that often there is a complete lack of understanding, even from your closest circle. They don’t mean to be so, but no one really “gets it” unless they have it. It can make people with lupus feel alone, and in some cases people have lost friends because those people just didn’t care.
Luckily, I have experienced almost the complete opposite. Sure, there have been a few friends who never bothered to ask me how I was doing when they knew I had been in the hospital and had to quit my job. And that hurt. But that was only a handful; instead, I have never felt luckier or more appreciative of my friends, both old and new, who really were there for me. And I don’t think I could ever thank them enough. I was also cautious to tell new friends I have made since my diagnosis. I didn’t want that to be one of the first things they learned about me. But when I told people, I never got any comments like “But you don’t look sick” or “Maybe you should try changing your diet” that seem to be expected. Instead, they were fully understanding and supportive straight away. So yeah, lupus sucks. But you realize that the people who matter are there for you. And you love them even more for just being there.
Doctors Have to take You Seriously
Before diagnosis, some lupus patients are suspected of hypochondria, but I’ve found since being diagnosed, no matter what complaint you go to the doctor with, they cannot ignore it “just in case.” Which is pretty good really. Even if I’m worried I’m wasting their time, they’ll never let it show. Even while studying in Spain, I’ve had trouble with the bureaucracy and it’s affected my access to healthcare, but they wouldn’t let me be unable to see the doctors I need (thank god). I know a lot of people have complaints about doctors, but they know what’s important and their main job is to make sure you’re OK. So you can go into an appointment knowing they will pay attention to you, and that whatever you say will be taken into account.
It Kicks You Into Well-Being
I liked to think I was pretty healthy before I was diagnosed. I always ate healthy: fresh produce and homemade meals by yours truly (so it was annoying when I was undiagnosed and struggling and so many people just assumed I wasn’t eating properly). I even joined the gym (until I got so ill I could barely drag myself out of bed, let alone to do a session of zumba or cardio).
But with lupus, a healthy lifestyle is more important than ever. I’m now even more conscious of what food I buy. I make sure I’m getting all the necessary nutrients, I make packed lunches of pasta and salads for long days at university instead of buying who knows what at the cafeteria, and although I’m not a gym bunny yet, I make sure I stay active by walking most places. Your body is a temple, even if it is under permanent restoration. When your health becomes your number one priority, you realize how delicious healthy eating can be.
You Can Feel a Sense of Invincibility
There can be times when you feel totally vulnerable. Your body is in a constant battle with itself, and the littlest infection puts you at high risk. But despite facing constant setbacks, the overload of pills you take each day allows you to live each day. Every achievement becomes so much more meaningful when the odds are against you.
You Appreciate Things More
Time with friends, time with family, concerts, walking about in the sun, late nights and long days. These are a few of my favorite things (or at least what I appreciate more knowing they take a toll on me more than they used to). The fact you can still live a normal life despite the doctor appointments, hospital visits, tests, medication and general “approach life with caution” attitude means every good moment is a lot more meaningful to you.
An Excuse to Nap
Because who doesn’t love to nap? At least now I can have a nap and not feel guilty.
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Thinkstock photo via OGri.
After being diagnosed in 2016 with lupus when working as an English Language teacher in Spain, I have since lived in Barcelona and Berlin for my master's degree, and I currently intern in the EU Parliament in Brussels. Always determined to not let lupus control my life, always learning lessons. When I’m not trying to communicate to doctors, I am having fun with travelling, photography, or trying to get my dog’s attention on FaceTime.
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