Could I Still Be in Denial About My Lupus Diagnosis?
I woke up this morning and had to talk myself out of bed. I prepared my laundry for pickup, but then needed to lie down to catch my breath. On some days, the mere act of sitting up has been a challenge.
I remember moments of being a fitness competitor. Or running along the sidelines at my son’s football games, cheering the team on. Or moments of dancing the night away when my friends and I went out for girls’ night.
Now, I have to lie down after sorting the laundry. At times I think to myself, “This is not happening. This is not your life.” Or, “I need more mental resolve because this simply cannot be.”
Next February will mark four years since my diagnosis. I have so much under my belt, including multiple hospital stays and medication highs and lows that I can almost predict based on symptoms. Yet somehow, for some reason, I still want to think I can run marathons, climb mountains, and conquer physical monsters at will, all before lunch.
When I think of lupus, I also think of the doctors who initially ignored many of my symptoms. I thought it was all in my head until something in my bloodwork changed so significantly that I could no longer be ignored. I have to laugh at times — I live in this body, I experience every single symptom, and yet, I don’t even always believe I have lupus.
Does that make me a little insane? How can I be almost four years into this diagnosis and still think I can push through? What makes me think I can mentally overcome this?
The sad thing about this weird form of denial is the feeling of deep disappointment that comes when acceptance kicks in. I try to never ask myself questions that have no answers. It’s a waste of time. I’ve never asked why I got lupus, and I just figured out how to help others by sharing my experiences. Now, I can’t help but wonder, “Is this my entire life?”
Since my diagnosis, it seems that each year brings a new symptom. It’s not something minor like a broken fingernail, but rather something big, like a broken kneecap — something I never saw coming. Not many people understand that.
At times, I feel as if I’ve entered a new, unfamiliar world. I have no clue how I arrived in this space and I just want to get out. It makes me think of that episode of “The Twilight Zone” when aliens visited Earth and did nice things. They kept saying their goal was to serve humans, and we took that to mean they wanted to do nice things for us. They finally convinced a group of humans to go to their planet, and we realized that by serving humans, they meant on plates.
Lupus has served me up and I am still experiencing disbelief. I just wonder how long it’ll take for me to get to full acceptance.
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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.
About the Author
Paula Blackton
I'm told my Lupus has to do with my blood and clots. I've had a clot in my left arm. Doctors say I couldn't possibly have Lupus because nobody else in the family has it. My body is constantly getting bruised and numb. I get tired easily. I'm tired being the alarm clock for everyone, when I don't want to get out of bed. Sometimes I feel like I'm just going crazy.
Kellie McRae
Hi Paula, we know our bodies best. The only person I had in my family with lupus before I was diagnosed was a cousin who passed away from it in the 80's. If you have no solutions, I would encourage you to keep pressing. We all deserve to be diagnosed properly so we can be treated with the proper medications. I wish you the absolute best in finding solutions.
Joanna
May 10, 2019, marked 22 years since my Lupus (SLE) diagnosis. At my four year mark, I was forced to walk away from a promising career in public relations. Prior to my diagnosis, I was quickly climbing the corporate ladder at one of the top three global pr agencies. I loved my job & the work I was doing in the agency’s health care division. That all came to an abrupt end after a routine visit with my rheumatologist where I was placed on total temporary disability.
Devastated by this decision, I was encouraged when my doctor said, “Let’s just give it six months & see how it goes.” That was 18 years ago.
In my experience, you learn to adapt; not because you want to; you don’t have a choice. Eventually, I was placed on total disability & started receiving SSDI benefits while performing minimal work as been an independent pr practitioner.
It sucks. Lupus sucks. Pity parties are essential to the process but you have them, then move on living life with Lupus vs letting Lupus live your life. I’ve found that a little does of denial never hurts. You might pay for it later in the form of a flair but, sometimes the flare is worth it just to know you’re still living.
I mourn my pre-diagnosis life. That person is dead. She will never return so, I do the best I can with the crappy hand I’ve been dealt, knowing someone out there has it worse. It doesn’t diminish my reality, just puts it in perspective.
Your journey has just begun. Have faith that you can & will make it through this unpredictable, frustrating life with Lupus. Embrace it & keep on living.
Kellie McRae
Hi Joanna, I read this, then I walked away, I read it again, then I sat with it and then I read it again. I had to look at this and wonder if I wrote some of it. I loved the life I had and I was devastated as well. Unfortunately, me running off to other countries did not help me get a disability rating and I am now jumping through hoops to try to get that approval. I so agree with you that we don't have a choice but I keep stomping around like I'm in charge. Lupus keeps showing me that when it decides to be in charge, its in charge...but I keep stomping and fighting. I don't know if what I have experienced over the years has been a little dose of denial. When I look back at my total focus being on chasing remisison, I think I have said out loud a lot that I have lupus but I really wonder if I have ever actually accepted it. Now for my sanity, its time to acknowledge that we are in this together for the long haul, me and lupus, lupus and me. We will never be friends but I will do my best to deal with it on my worst days in exchange for the smiles and joy I experience on my best. Thank you so much for reading my mind :-) and for sharing.