Why I’ll Be Unapologetically Vocal About My Life with Lupus
Some might be ashamed of their status as someone with chronic illness, however, I’m not. I wouldn’t say that I’m proud of it, but it’s also not something that I’ll ever work to hide from the world. In fact, I’ll endeavor to share it as much as possible.
Worldwide, millions of people are diagnosed with lupus, yet there’s still such a large majority who has never even heard of it. I understand that not everyone wants to voice their struggle with lupus. For some people, the “invisible” part of their invisible illness keeps it hidden from the world – exactly how they’d like to keep it. But I’m not one of those people.
Imagine if every person with a chronic illness was unapologetically vocal about their struggle. How much more awareness would there be? How much less stigma would surround us? How many of us would benefit from the world understanding just that little bit more about us?
The thing is that I know not everybody wants to hear about lupus and that some people are going to get sick and tired of listening to what I have to say. Respectfully, I don’t care. I don’t write or share photos for those people. I write columns and post photos for myself and all the other people in the lupus and chronic illness communities. And every time I push past that feeling of second-guessing myself, I know there’s every chance my daring has helped educate one more person, even just that little bit more.
I want to help break down the stigma that surrounds illness. I want others to feel less alienated by their illnesses, and more empowered by the support and knowledge of the people around them. I want to share my experiences with the world, in the hope that even one person somewhere in this big, bad world feels more understood.
The generally accepted idea is that if you’re diagnosed with something, you need to keep it to yourself and endure it in silence, but I can’t understand that way of thinking.
Lupus was not silent as it slowly attacked my kidneys, temporarily impairing their function and causing me to retain fluid. It is not silent as it continuously plays with my blood pressure, my sleeping patterns and my energy levels. And it’s definitely not silent as it threatens to derail my life at any given chance, forcing me to constantly reevaluate and redirect.
Lupus will not ever stay silent, so why should I?
I don’t believe that I was given lupus for a reason, as I did nothing to deserve it. But every day, I get up and choose to make lemonade out of the sour fruit life gave me.
I won’t force you to listen, but I’ll ask you to. There’s an entire community of people out there, and we’d love if you’d take the opportunity to be educated — even if it’s just for a single fleeting moment.
Even though I’m young, I’m committed to awareness because it’ll benefit me just as much as someone who’s older. Personally, my struggle is getting people to understand that although I’m part of the working–class age category and appear to be fit and healthy, there’s a lot more to me than meets the eye – and I don’t just mean personality-wise.
I want the cashier at the pharmacy to be less surprised when she asks whom the bagful of medication is for, and I answer that it’s all mine. I want to not have to be downhearted and ashamed when I can’t make it to a lecture or the gym because I’m just too tired. But most of all, I want to be able to talk about my condition as if I were discussing a sprained ankle or the common cold. I want to normalize chronic illness within the wider community.
Maybe I don’t have a loud mouth, but I’ve got a big voice and I’m committed to a message very close to my heart (and kidneys!). So, I hope you’re ready for what I have to say!
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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to lupus.
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Comments
Ashlyn lambert
Amen sister!!! We need help we are suffering!!! I've lost 15 yrs of my life! The struggle is real the pain is overwhelming. I'm tired of my face my body stinging like I'm n a bed of fire ants my organs burning I'm over it all!! The drs see lupus n they disregard all the other disease causing chronic daily pain!! I can't escape this hell n I don't deserve ANy more flare s and pain.i want to live again!!! I am a fixture in my bedroom. I never see the sunrise the sunset the flowers blooming the seasons come n go as I lay n this bed so sore from the muscles deteriating my nerves all over like fire ants stinging each nerve head to toe. My skin so senitive my spine breaking. Lord help us please!!!!
Ashlyn lambert
Get us out of this nightmare of suffering!! I can't take this pain chronic deep. That comes from Lupus fibro muscles breaking down organs burning kidneys constantly attacked. Can someone anywhere find the true prob fix it!!!!!!!!!
CC
Hmmm... I really enjoy reading how people learn to cope wit Lupus and it's always made me curious why people feel that people who "hide" their illness is ashamed of it. To me, i've had a lot of time to deal with it - and decided I am not the type of person who would be comfortable with using it to explain why I am late or missed a planned event. Since no one can truly compare fatigue as I feel it to someone else's - and being sick does not mean there arent days where I am just genuinely lazy - I would rather take a lazy label or forgetful label and get scolded rather than deal with the incredible frustration I sense in others because you obviously are missed when you aren't around - but lupus often creates more distance from people because asking them to understand what they can't - is generally unfair. I kinda feel like we act like the disease makes us strong or brave - but I have always seen this as ridiculous as a stereotype based on gender religion or sexual orientation. Honestly, a lot of women have bad cramps anemia and are bed ridden once a month and often may be worse off than a bad lupus day. We don't get to make something which is nothing more than any human's inherent survival instinct. Like wanting someone to praise us for avoiding an oncoming car while walking or not drowning when we fall from a boat. No one blessed us, nor do we really have a choice but to deal eith it or die. I am honestly probably a better person after having lupus because I had no sense of danger and was pretty much incapable of anything approaching a useful skillset. I got sick, learned that people were irritating whether they were repulsed by it or pitied it. I was more or less happy alone and being sick was just easier to recover as I learned to deal with it alone. I don't think talking about it changed anything. People were entitled to feel however they wanted. I don't see my disease as something that has any sort of emotional connotation - and I hate how romanticized it feels because I wasn't aware that having someone not accept lupus was something I should feel bad about But I also admit I have a bias against people who make a big deal and go on oprah as if not dying is their unique and personal life achievement. Oh please.
I have experienced people guilting me for not confiding in them or leaning on them but to me, I feel that each flare is a data point that each has made me faster and more efficient with each flare. I tried to do the support thing once. But I found I don't enjoy talking about it so much as seeing how I experience physical symptoms but have far less angst about it as others who seem to be affected by the most uncontrollable variable in all lives - the actions of others. I also find that the stigma pretty much seems to be about people using illness to make things easier. I got scholarships to college and went to get a phd quantitative analysis. I quit but told my parents I got kicked out because I didn't want the perfunctory questions about whether it was because of my illness. I also hated how much being sick made me too tired to be a true academic delinquent and didnt want to build up my academic achievements on the fact I had nothing better to do on days I was too tired to get out of bed. I just never could accept any body praising something that was more an accidental outcome of wanting to not be so bored while I was tired in body but going crazy in my head.