Growing Old Before My Time
Every time I go for an appointment with my renal doctor, I’m reminded that I’m an anomaly. Before seeing my specialist, I jump on the scales in the waiting room, the procedure for all patients. But as I unlace my shoes and step up to be weighed, the seniors in the room all wear the same expression of bewilderment and disbelief that someone so young could have such serious kidney problems.
Unfortunately, this isn’t an uncommon experience for me. Too often, I’m reminded that I shouldn’t have the problems I do at my age. In some ways, I feel like I’m 21 on the outside and 60+ internally.
I don’t have the issues of your average 20-something, and I’m reminded of that time and time again. Doctors, nurses and medical professionals never fail to mention that I’m at least 30 years younger than their usual patients, and it’s always accompanied by a look of pity that I can’t bear.
My priorities often aren’t the same as my friends’. Sure, I still worry about university assignments and exams while trying to maintain a healthy work-life balance, but before I can even think about any of that, I’m thinking about my kidneys and my health.
Medication, exercise and doctor’s appointments are at the very top of my priority list. Everything else is secondary, as it has to be. I don’t have the option not to think about my health, as being lax would have serious repercussions.
A lot of people don’t understand the full extent of my condition. They don’t understand how much medication it takes to stop my body from destroying itself, how many nights I stay awake unable to achieve the basic human function of sleep, or how many mornings I’m forced to oversleep only to wake up and wish I hadn’t.
I’ve become a young adult with a mental maturity far beyond my years. Being diagnosed as chronically ill forced me to realize that I’m nowhere close to invincible and that nothing should ever be taken for granted — especially health or time.
I’ve thought about organ donation or donating my body to science, and while they’re not typically the kinds of subjects you’d be thinking about at my age, even though I probably shouldn’t be, I’ve become incredibly comfortable with it all.
In my early 20s, I’ve faced my mortality and had to acknowledge death as a very real part of life. I’ve had to grow up much faster than I should have and that leaves me with an anger I can’t resolve. There are years I won’t get back and moments I won’t ever experience because of lupus. At 21, I’m so much older than I ever thought I would be, and while it’s not always a bad thing, there’s always a part of me that would do anything to have the feeling of being carefree that I always assume was meant to accompany my youth.
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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
Terrace
Wow! This article spoke to me. I can't even explain how similar my experience is. It's like you were writing about me. I appreciate your openness about your experience. It helps people to understand what it's like to live with this. You're an awesome writer. Keep it up!
mary C.
Lupus Inside Me.
On those days that I'm able to venture outside of my house I sometimes run into old friends and they always greet me with
Why Mary you haven't aged a bit so how have you been doing? And I reply well, I'm living with lupus so it's been a while I don't get out that much anymore,
But I'm okay....
Then I wait for a response and their reply, well you don't look sick, those words that every lupus patient dread hearing so I pause for a minute because at this point I am seeing red
And so I fade back into within myself thinking to myself if you only knew the hell that I'm going through, the strokes, kidney disease, high blood pressure and the complications that come with lupus,
So I may look like I'm fine on the outside, but on the inside I have the body of an 80year old and lupus is the reason.
Jeannette Hernandez
Well I can really say that I appreciate you writing this. I'm sitting in the hospital and I really didn't think this time I was going to be kept. Unfortunately this time the Drs are so clueless to what's going on with me it really fucken sucks. This time things habe gotten worse then better and I'm scared I have my 17 year old son that won't leave my side and I have a step daughter 12 and my baby that's 9 who is my all. I have my husband who is actually truly taking time to understand more about my illness and is by my side more then ever. I thank God and although This time is more harder. God will allow me to remain strong through him and he knows I need at least ten more years to see my kids graduate. Stay strong and God will get all of us lupus survivors through the rough time
sfv
Everything here is familiar to many of us I'm sure. I've been living with Lupus all of my life. I'm 45 now and was diagnosed when I was 19, and I know I was born with lupus because you are born with this disease until something happens in your life that brings the beast out, as i call it. I've been through it all, the treatments in beginning, dialysis, seizures, have insomnia now which sucks cause i look like I never get sleep. I take lots of meds that I need if I want to keep my Kidneys functioning and live a better life. I was blessed with a kidney in 2012 and God willing this will last me as long as I live. I've learned to live with Lupus. I have to be strong for my son and husband. I work full time out of home and at home. With Gods grace I do live strong and better. I believe if your mind is strong your whole outlook on life is better.
Rob O'Sullivan
Dear Kristiana, As the grieving husband of my late wife Ingrid who had Lupus for 46 years I regularly read your articles about life with Lupus and feel nothing but compassion and understanding for you. So much of what you write reminds me and reflects the life that Ingrid lived so courageously and positively just as you are doing. Ingrid passed away on 20th May 2016 in our 37th year of marriage. She was an amazing woman who inspired so many others in the way she lived her life dealing every day with an adversary that would never leave her and constantly reminded her that as much as she wanted to live a healthy life, she couldn't. Yet she never complained and never said "why me?". Her attitude and tenacity with getting on with life (however it was on a daily basis) shone through in her happy disposition and her warm friendly interaction with everyone that had the good fortune to know her or meet her. It wasn't Lupus that eventually took her life, it was simply falling over and breaking her arm. But because of so much collateral damage caused by medications used to control Lupus and other complications in hospital she could fight no longer and died 14 weeks later at the age of 61, a lot older than many expected. Lupus has been described as a wolf in sheep's clothing and Ingrid fought and won so many battles to the amazement of the medical profession. But it was a pack of wolves that ganged up on her and took her life. I am sure that her attitude and love of life is the reason she lived so long and despite all the negatives of having Lupus she was happy to the very end. So Kristiana I commend you on your writing and your attitude to facing the hideous disease you have and encourage you in everything you do. Just like Ingrid, you are presenting and creating a wonderful example for others in trying to understand what its like living with Lupus and how to embrace the life that is yours even though you're living with a dreadful illness. You have never met Ingrid but I hope that her legacy will be a source of inspiration and comfort to you and everyone else who reads this.