The Problem With Forced Positivity
When my body started failing, I hopped on social media and asked if anyone had dealt with similar issues.
As the mystery built, I coped by using comedy and positivity, as I often do. When the weight of finally being diagnosed with lupus hit me, I kept the hardest parts to myself while sorting out what it meant for my life. In public, I continued to display comedy and positivity.
Every so often, I let out a complaint or a frustration. I often let people know when I am venting or complaining, and I add, “Thanks for reading or listening, because this serves no one.” But in reality, it serves me.
So often, when people share their frustrations, complain, or vent, they are told things will get better or that they should think positively. However, there is a place for frustrated feelings, and sometimes you have to get them out.
We seem to be hellbent on always smiling, looking at the bright side of things, or finding the silver lining. I tease and say I can find the silver lining in lead, but I can also allow lead to be lead.
There are days when I am angry, afraid, anxious, frustrated, and surrounded by a cloud of negativity. Only special people really get to experience these times.
One thing I have learned about myself is that I will usually laugh to clear my tension. Even under the worst circumstances, I will make jokes. However, when I need to cry or feel bad, I make room for those feelings as well.
Always wanting to push positivity during adverse times is unnatural. We were given tear ducts for a reason, and the tears that flow are not usually tears of joy. Sadness, anger, and fear are natural feelings. We should honor them, just like we honor positivity.
I rarely tell others to think positively or say that things could be worse. I often advise people to feel their feelings. I have shared openly that I am in therapy. That’s not because I’m a vision of togetherness. At times, I’m a total mess, and I accept that.
When I am a mess, not everyone needs to be involved. But if those close enough to see and hear about it constantly told me to pick up my spirits or that it could be worse, I would feel diminished.
I feel what I feel, and to suppress that says there’s something wrong with it.
I am known as Queen Bubbly Bee. I will eventually get back to being positive — not because I’m faking it, but because that’s just who I am.
A few years ago, doctors were concerned that my brain was shutting down certain nonessential bodily functions. I sat with it, cried, dealt with my fears, and got angry. When I called my kids, who were freaking out, I said, “Even with brain issues, I’m smarter than 97% of the population.”
I don’t think I’ve ever heard my daughter get so angry. She yelled at me like I was the daughter. My humor was not appreciated, but it helped me deliver difficult news.
Humor is my go-to, even during the worst times, but that doesn’t mean it’s not backed up by fear, anger, or anxiety.
When someone is venting, please just listen. Don’t tell them to think positively, that it could be worse, or that someone else has it worse. Who cares? I am not living their life, and based on this logic, I should never be sad or upset because someone else will always have it worse.
In the interim, I would like to be allowed my negative moment without being admonished for not being positive.
How do you react when you’re told to think positively or that it could be worse? Please share in the comments below.
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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, and are intended to spark discussion about issues pertaining to lupus.
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Lisa Nance
Excellent article. I vented to you earlier about my depression and feelings about what we have to go through as black people.
Kellie McRae
Hi Lisa, Yes, and the thing about when someone vents, it is nice to know you have someone who will listen and not diminish your experience even if it is different from their own. Thank you for chiming in :-)
DiAnna
I have a friend who told me when he noticed his 12 year old daughter was struggling, and he asked her about it, she said she was feeling ‘fragile’. I like this term because it has such good range. It allows strength at the core, like glass; so differently from ‘scared’. it also allows sensitivity to be agitated or angry; fragile like a flower or fragile like a bomb. I stole it. I use it now, and I feel more courageous and justified in expressing those dark feelings.
Kellie McRae
Hey DiAnna, I like that too but there are also some days where I am feeling angry and far from fragile but no matter what, we need to find ways to express that. It can't be sunshine and rainbows all the time, fragile definitely fits. I'm glad it allows you a way to express yourself by using it.
Gaile Valcho
Sometimes I could scream when I hear well meaning people say to me, during my most vulnerable times, "Well, things could always be worse"... Ugh. Really? Is that your advice? Or attempt at comfort? I would rather them say nothing.. And I have as much told said people this. Well..in our world.. it is pretty much - WORSE!
All I really want is to be validated and heard. We as lupus patients want a safe space to vomit all of these feelings up and not be judged that we are drama queens, cry babies, attention-seekers or whatever-you-want-to-call-us. Seek out one friend or family member that will listen, not judge, and let you get these feelings out. Or write them down. But get them out someway.
Kellie McRae
Hi Gaile, I really do get annoyed with the same phrase. I shared about a week or so ago on FB something that wasn't so positive and someone (another warrior) said, look on the bright side. My response was "No, I choose to honor my feelings even when they suck" lol One thing lupus has taught me is sometimes its best to close your mouth and open your ears. As you said, you just want to be heard and validated.
Cathryn Grayson
I cannot tell you how many times I have heard, oh so and so (their neighbor, cousin, friend of a friend, etc) has it and they’re just fine. Like it’s absolutely nothing. I’m actually going through chemo for mine and feel horrible most of the time. I got the same response when I had thyroid cancer - oh, that’s the easy one, you’ll be fine! Never mind people actually die from it. I wish people would be more compassionate before speaking.
Kellie McRae
Cathryn, my eyes bulged open so wide when I read "that's an easy one" there is nothing easy about facing your mortality head-on. I'm sorry someone would say that to you, how horrible but I know they think they are providing encouragement but I really wish people would ask themselves how they think they would receive some of the things they say as they try to comfort others. I think that they actually think they are being compassionate, kinda scary huh?
Nancy
Wow, what a beautiful and soul-felt piece. Thank you for writing this, as it takes a lot of courage. It does seem challenging in our culture right now to share heavy things, especially things that may be incurable. I have lupus too, and while I am also a super positive person too, you’re so right that we have to honor our laments as well! The brain lupus in my experience is the hardest to deal with, at least for those of us who [perhaps too strongly] identify with our intelligence. A very humbling path to walk. Thank you for this piece - Love
Kellie McRae
Hi Nancy, thank you for sharing your thoughts with me. Lupus gives me brain fog and I am so insanely frustrated on those days when people are finishing my sentences because I can't remember simple words so I can't even imagine what I would be like it my brain was the primary focus of my lupus. I had a scare a few years ago (again, mentioned that in the article and dealt with it using humor). Lupus is scary, you never know what will be affected next so we really need to honor our feelings so we can cope with not just what is already happening but what may come down the line as well.
Robin George
Thank you Kellie for putting it in words how often we lupus warriors feel. All to often we receive multiple new diagnoses on top of lupus that can be just as frightening or just as life altering. We can’t be expected to react with our usual positive, fight this mentality. We are human and need time to adjust and sometimes use the usual coping mechanisms of anger, denial, fear, and sadness and feelings of loss. The use of humor or minimizing the severity of the condition to others or even to ourselves in order to cope is quite normal.
I agree venting is helpful to friends that are supportive. I have also found the opposite. My venting has fallen on deaf ears with certain family members. This has only enhanced my pain and loneliness and forced me to seek support in a support group with fellow lupus warriors that understand our unique challenges. Thank you again for writing this timely piece. I think everyone can relate with the roller coaster we have been on this past year!
Kellie McRae
Hi Robin, you said it all! We need to deal with the grieving process and I think for many on the outside looking in, they don't see where we've lost. We still look the same to them so what would possibly be wrong or different? While I have many supportive family and friends, there truly is nothing better (sadly) than someone who is enduring something very similar to you that can actually relate. I love having the support of other warriors but I sure wish they didn't have to be in this battle.
Janet
Great article. I don’t often reveal my true feelings. Living with lupus , fibro and now recent diagnosis of. psoriatic arthritis . I either feel people won’t understand ( like a colleague said yesterday) yes I get stiff in the mornings it’s old age🙄). Or I am burdening others with my woes. 0ften others feel helpless and don’t know what to say , so you don’t bother. How often do we tell others ‘ were fine’ probably daily !
Very thoughtful article. Keep writing. Janet
C Howze
Wonderfully said. I had a complete breakdown Christmas Day because I didn’t feel appreciated and it was a few days after my 10 year anniversary (need a better word but this will have to do) of being rushed to the hospital and no one knowing why I was so sick (it would be nearly a month later and a MUCH better hospital to finally be diagnosed with Lupus). So thank you for this because I felt slightly guilty about my breakdown happening on Christmas Day.
Kellie McRae
Hi there, sadly, I think we all have this guilt but we didn't cause our illness or the things we feel that come with it. I'm glad my article helped you feel better, I know it's easy to say we shouldn't feel guilty but we do but I'm also glad that you recognized why you felt what you felt. Our bodies don't care what day it is, when they act up, we must listen. Glad you did.
Denise Conyers
I, too, am 99.9% upbeat and happy. I have my moments of anger, disappointment, fear, and emotional train wreckage, I usually have a “blue timeout”. This usually includes staying in bed for as long as I need, but we should be able to vent!
Kellie McRae
Hi Denise, I like the name you have given it. A blue timeout is a perfect way to describe it, especially since you stay off to yourself. We definitely need to have our moments, it's good for us mentally to blow off steam. Thanks for sharing, I'm going to start calling my icky moment's blue timeouts too. :)
Stephanie Smart
Thank you Denise. Blue time-out is a perfect description. I am going to give myself permission to do that. Well...I will work at doing that AND not feeling bad taking time for me. Bless your heart Denise.
Christine M
HELLO MY DEAR WARRIOR:
My advice to anyone is to know that NO ONE knows how this Lupus life makes you feel.
Each of us is a special unique person with our own reactions to Lupus, meds and life.
In this time of Covid: I feel guilty complaining about ANYTHING. The result is I am feeling depleted. Stomach lining inflamed, anemic etc. Not sharing has not served me well.
Long story short; live your truth. You have a right to be you and be supported. You support and lift up so many.
Those who really love and cherish me can accept my truth and I don't have to HIDE feelings or feel pressured to always be positive and up. It renews me.
I am wishing that support for you.
Love in Lupus,
Chris
Kellie McRae
Hi Chris, I find it ironic that you feel like because of Covid you should not complain. I tend not to complain per se but definitely believe in honoring my body and my truth. I know a lot of people have been affected by covid but a lot of people have been affected by lupus as well so I don't look at one as a reason over the other not to feel your feelings. Holding things in is never a good solution, I'm glad you realized that. I also love that you mentioned we are all different, its so funny when people tell me of others who have lupus and how they don't have this symptom or that one, even though the issue with our bodies has the same name of lupus, how our bodies deal with it is so very different. Thank you for acknowledging that. I wish you wonderful days and I'm glad you have people who don't make you feel you must be anything other than honest about what you are feeling.
Roxie Webb
I often feel that I may be perceived as I'm complaining or that I am just seeking attention... It is so difficult to share with most.... It is so isolating. I don't want to answer each time someone asks,"How are you doing?", I'm feeling like a cloud is hanging over me mostly everyday.... I just push through... Be blessed
Kellie McRae
Hi Roxie, I know what you're saying. I tend to only be honest with those closest to me. If I am asked how I'm doing, I give that standard "I'm good" answer even when I'm not good. I have learned that only special people will really care how you're doing. Cherish them.
Margaret S Suits
Hi, Kellie and Warriors, I'm sneaking in, having discovered your colomn when reading about Cellcept. My Momhad Lupus, and I have had GBS which morphed into a rare (aprox. 5 folks in a million)CIDP varient. Having read your letter about fatigue, I felt a weight off my shoulders...you described the battle of fatigue so eloquently. Then, I read more, and this letter and the replys have helped so much. After 15 painful years, I tend to "fake it", and not share how bad I feel. I like what you expressed about being selective.with who you can let your hair down with, and otherwise, use the "I"m good response". Though I'm not living Lupus, my auto immune struggke affects me in a similiar way. Thanks for allowing me to piggy back, and best to all of you, in the memory of my Mom, Mary. Take care. Maggie
Carol Waldenburg
Roxie, I know that cloud! I hate that cloud! But the problem for us is as we all FEEL, how do you balance being truthful and Real without feeling we’re complaining or just being negative all the time? I have always been adamant (since diagnosis) that I’m not going to candy coat it for anyone, but I don’t want to slam them over the head with really bad sh— either. So I try to be factual, not emotional with most people and to also at the end of a statement to throw in a good piece of information - even if it’s a bit silly ... “At least this week I didn’t fall up the steps into the house as usual due to the vertigo,” Or, “at least this week my cats got breakfast before howling me out of bed as they usually do because I can’t move before my morning meds.” People can take reality, but in smaller doses than we can. We live with such hellacious things, it becomes normal for us. Most people don’t realize that So much can go wrong with a body - and at once. We are often not called upon to minimize or Candy coat our illnesses and conditions but I think to help people understand at a rate they can take in. We need to be truthful - we need to be more visible with the truths. For Lupus to get the attention and read watch funding that is desperately needed, we must tell our stories. Perhaps though in doses that your average person can take.