This post may offend some people. But what's a writer's purpose when they don't move their readers in some way?
I saw the above quote and picture on Nathalie from Easy Peasy Kids' Facebook page. It is an idea I've been thinking about for a while. Especially around the disability/chronic illness community. Perhaps I am too blunt, or too hard. But illness one-upmandship really shits me.
One-upmanship. It's the comparitive behaviour that says "I'm better than you". Got a better car. A higher paying job. A bigger mortgage. Smaller sized clothes. The biggest penis. You know those people.
Is it really necessary to be THE BEST at illness though? I'm talking the "I've got it worse than you", "my illness is more painful than yours", "having a child with ABC disability is much worse than having a child with LMNOP disability", "at least you don't..." and the "my illness is the rarest" sayings. So it may be. But these sayings come across callous, and with little empathy. And it really questions the validity of an illness. What is the prize for who has the worse illness? Is there a medal? Or is it just a lack of perspective?
I have the wisdom, perspective and compassion to acknowledge that my illness is not the worst in the world. I understand so many in this world suffer from cruel symptoms. I really feel for these people. While I think it's fair to say it's much worse than a common cold, or perhaps a minor skin condition, I will never say to someone I have it worse than them. (Note - I didn't actually realise just how serious my illness is until the dermatologists told me that if an infection on my skin gets so bad it could get into my bloodstream and then my heart. So I do think it's fair to say it's a bit worse than a common cold.) Illness one-upmanship is one of the reasons I am not too keen on support groups for specific illnesses, because there is so much comparison about who has it worse.
I've been one-upped, several times. It's been said to me that my pain looks nothing compared to someone else's. I was offended by this. Pain is relative. How do you know what my pain feels like to make an assessment that yours is worse than mine?
Someone posted in our Ichthyosis Facebook community that other people with Ichthyosis have doubted the severity of her condition and have sent her nasty messages about her appearance, because it doesn't look Ichthyyosis-y enough. What? As with most chronic illnesses and disabilities, there are different variations of Ichthyosis.
A friend - Magneto Bold Too - who has a severely autistic son, told me that another mother told her she ought to be grateful her son's not blind. I can see that both disabilities are severe. But just as the mother of the blind child faces challenges, my friend does too.
What my friend, and the girl with Ichthyosis, needed was a "yeah, we may not be in the same situation, but I get you. I get how hard it can be". An empathetic ear can be like medical treatment.
One thing I have learnt in mentoring young people with chronic illnesses, and also having friends in the disability community is despite our differences in conditions, there are so many similarities between us, and so much can be learnt by sharing each other's experiences. There is great empathy to be shared between us. While I can't begin to imagine what someone with Cerebral Palsy is challenged with in terms of mobility and accessibility and caring needs, I can empathise with some of the social challenges and discrimination faced, as well as their triumphs. I have seen speeches and comedy shows and TV programs and just chatted with friends with chronic illnesses and disabilities, and thought, yes, I get it. I get what you are going through. My illness may be more or less severe than yours, but we share something.
Illness one-upmanship is not helpful. There is no need to question the validity of an illness. I believe it can lead to a very resentful and bitter outlook. We are all in this chronic illness/disability boat together.
Show a little empathy and stop comparing.
Use your experience to help others, and to promote awareness, so ignorance does not perpetuate.
Treat everyone with kindness and don't make assumptions. You never know the battles they may be facing.
No illness is less worthy of treatment/research/awareness than another.
Edit: Carma Chan sent me a tweet describing illness one-upmanship as "more oppressed than thou syndrome". Says it all.
Great post Carly. I also hated it when people said "just think of all the people who have it worse than you" when I had depression, as if that would somehow help me feel better! Very well said.
ReplyDeleteYep - I got that the other day - when I didn't even comment on whether I have it good or bad, just an innocuous tweet, and a friend told me to remember those who have it worse. It is tough. I imagine it is really tough with the stigmas around depression and other invisible illnesses. Thank you for the comment and for reading.
DeleteYour words talk to my soul..a very honest post xx
DeleteThank you Andrew :)
DeleteGreat post, Carly. I see so much of this and I know that I've been guilty of it myself at times. You know, "My trauma was worse than yours!" My sister keeps reminding me though that it is all relative. Some people tell me that they cannot imagine, let alone survive some of the stuff I've been through, but I, on the other hand, can't see how I could ever deal with some other stuff that people have to deal with. I think, in the end, we all do what we have to do to get on with our lives. Dealing with what we have to deal with. Comparing ourselves with others does no-one any favours.
ReplyDeleteYes, guilty as charged, but hopefully, at least aware...
Thanks for commenting Dorothy. You have been through a lot in your life - and it is hard for me to imagine. But I also see you find empathy/shared connections in those who have faced different adversities, and that is something I admire.
DeleteThanks, Carly :-)
DeleteVery true Carly - I arranged for a woman to come and talk to my colleagues yesterday about how she survived an awful awful loss and she said that she was determined not to give herself permission to live a bitter cranky life because of it. She chose to look at the world through a different lens. You can argue 'severity' til the cows come home but it makes life lonely if you can't empathize with someone's unique situation - its not nice to jump in and one up someone
ReplyDeleteThat's it Sarah - arguing severity. I am always inspired by people like that woman, who accept their lot in life, and just get on with it, using their experience to motivate others by sharing their story.
DeleteI think there's something in saying "Oh but I never complain" and then go in and one up someone. That is complaining right there.
Well said Carly! You're spot on. The first and foremost is to show more compassion and less judgement. I see the one-upmanship here to be all about Judgement. Everyone has the right to tell their own story without judgement. I remember the term "reverse-racism", it never was reverse, it was always just Racism. Sometimes people get lost in their own story, they don't believe there is anything different. Let's all just listen and learn from each other. Like you said, Empathy is a very good medicine.
ReplyDeleteThanks Joel - I loved your response :) It's judgement and comparison, and often jealousy. Not nice, nor supportive.
DeleteWhere you say "sometimes people get lost in their own story" - I see this a lot online. Perhaps a contradiction given I spend so much time writing about myself online, but I've certainly developed enough self awareness not to foster the "woe is me" outlook.
Yes it's the beauty of blogging that means you can write these things about your experience. We should all be here to learn from others' experiences. You gain nothing by trying to outdo each other in this situation. I say leave competition for Sport!
DeleteJoel Stibbard
Spot on! Great post, and words of wisdom!
ReplyDeleteThank you - I am glad others see it my way too.
DeleteI love this post Carly.Because I have degeneration of the upper spine and in my neck people cant see when I am suffering as I can still walk and do things,so they say "you cant be that bad if you can still do such and such." Makes me so upset.If it was the lower spine and I had a walking stick it would be a different story and that should not be the case.
ReplyDeletePain is pain no matter where in your body it is.
Thankyou for writing this and hopefully opening up peoples eyes so they no longer make those assumptions and there is more compassion in the world.xx
Oh Deby - sorry that people doubt you. You are so kind and loving, and I hope the people around you see that quality before they make nasty judgments. I often worry that because my skin looks the same every day, people will doubt when I am sore - why was I ok the previous day, but then not well today?
DeleteI must say, the one up-manship of pain (be it physical or emotional) is the reason I no longer visit disability forums. I understand sharing stories but really, why does anyone want to be "the sickest/most in pain"? What do you win??? A fucked up life! Who wants that?! Embracing our abilities, recognizing our limitations and treating others with respect is what it all comes down to.
ReplyDeleteGlow - yes! I am reluctant to become deeply involved in my comdition's Online support group for this very reason. I had bad experiences in the past - and now when I dabble, I see some negativity and judgement.
DeleteI found that ChIPS was the onlySupport group that was empathetic and supportive. The young people were amazing.
Brilliant post Carly.
ReplyDeleteThere's a similar thing that happens around birth stories, and it makes me sad and upset, has done for years. Now I see it happen in particular groups around my sons' diagnoses and I wonder what is it for? Who does it benefit, this need to be the most ill/damaged/obviously affected?
Kate - thank you for your comment. I see the mummy wars played out online and I think it's the same as illness one upmanshiop.
DeleteAs for the comparisons around your son's diagnoses - it can't be helpful for anyone.
Amen Carly! Cheers to being blunt too!
ReplyDeleteI have chronic eczema (amongst other things) and am for ever being told that someone has it worse than me. Yes, perhaps the parts I let you see are at times not too bad, but it fluctuates and I am a master of disguise. See, even now I am justifying myself! Grrrr.
The same goes the other way too, just because all the skin covering MY body feels 24/7 like it is covered in ants wearing sharpened stilettos, doesn't mean you can't complain to me about your itch, be it a rash or mosquito bite or even your own eczema.
Ps. I have often wondered if I followed the trail of those people who are help up as being worse off, who the ultimate "worst off" person would be.
Pps. I am a former ChIPS person too.
Ppps. Have been enjoying reading your blog, your honesty is refreshing and I have taken on board what you said about your washing machine - all the dermeze I go through probably means I should get it serviced!
Pppps. Have started learning to skate at roller derby and when I get up to that (working on standing up for now!), my name will be Superb Itch
Anna - that name for Roller Derby - Superb Itch - is the funniest thing ever! Love a girl who can laugh at her illness :)
DeleteExcellent blog. What is pain? What is trauma? By what scale are they measured?
ReplyDeleteI'm certain that the effects of illness, wellness, health issues, both physical and mental, (dis)ability etc etc are only truly measurable by the person that is experiencing them.
My scale of pain and discomfort and what I am able to bear, what is 'normal' for me, is really only relevant to myself.
The stoicism is very much a lost 'art' in today's society. I don't understand how someone would feel better saying their illness was more chronic than someone else's illness. All illness sucks. No one should think they are a winner at being sick. There really is no prize.
ReplyDeleteBrismod - I think maybe it's jealousy or trying to make someone feel worse aboIut themselves. There's often a lack of perspective and self awareness too.
DeleteBrilliant post, Carly.
ReplyDeleteSSG xxx
Thank you xx
DeleteLove this post Carly - interestingly it reminds me so much of Borg's Scales which are used at Pulmonary Rehab for patients to describe their preceived rate of exertion. Two patients with the same measurable physical results (O2 / Heart rate) can give themselves completely different ratings on the Borg Scale.
ReplyDeleteEveryone is different. Everyone's perception of their own illness and disability is different. A little compassion towards others goes a long way!
Another great post, Carly.
ReplyDeleteOneupmanship of any kind leaves me stone cold. It's not necessary and it's a lonely, boring way to live if you ask me. Live and learn, not live and compare. x
Great post Carly I'm so glad you took the time to write. This seems to be an increasing problem on forums and one which I am at a loss to explain. Why would you want to win the "I have it worse" prize when in reality it's the wooden spoon of life?
ReplyDeleteThose without who tell you "well at least it's not (insert disease of choice)", or "so and so has it worse", negate and invalidate the experience of the individual, essentially silencing their voice.
For those also sick it seems a perverse sort of fame. "I've been to the ER....amount of times", "my numbers are....", "look how broken I am", etc. These people become their disorder to the exclusion of all else. How can you ever hope to live any form of life when you are so wrapped up in the illness role?
Suffering is not a competition. We all have different thresholds, different issues which are hardest to bear. That doesn't negate the experience of others. It seems whilst many forums start with good intentions, compassion is eventually lost and empathy eroded until it can become like a really nasty school yard. Patients attacking patients, or carers attacking other patients as I saw recently on one forum, is really depressing.
Last year I realised I simply couldn't deal with it anymore as it's just not helpful. I've pulled back from most forums and tend to just do my own thing now. Life's too short to be pulled into that quagmire.
Michelle - you are so right - it brings you down. I rarely tale on advice from others with my illness, nor Give it freely. I think it's sanity saving to focus on your own health first.
DeleteYou made so many articulate points - thank you for your contribution.
sometimes people say silly things cause they don't know what to say, so they try and make it 'better'.
ReplyDeleteAnd then others are aiming for Gold in the Pain Olympics.
I had another woman at work who compared my sons various disabilities to her daughters diabetes. Saying that she had it so much worse cause her kid would be aware if she died. People are idiots.
Yes. They don't know what to say.
DeleteWhat that other woman said to you is just horrible. A real insult to your son's intelligence and emotions.
You're doing a great job Kelley. I admire you a lot.
Great stuff. I think this happens across the disability spectrum. It's useful sometimes to compare impairments in a constructive way as I do with my prosthetics buddies - oh! that knee works for you - show me - etc, but ya that Oppression Olympics is a miserable and fruitless game. I think it is sometimes about jealousy - I wish we could all get our heads around each of us doing our best with what we have, and that needs to be CELEBRATED.
ReplyDeleteI completely agree Carly! From personal experience I also have never really thought illness specific support groups/forums work very well, as it usually ends up I feel placing a focus on how bad the illness is rather than uniting on an understanding that we all know what it is like to feel different at times, like we do here or at ChIPS.
ReplyDeleteYes, a focus on the severity of the illness rather than forming a bond because of the understanding of experiences! You got it!
DeleteGreat post Carly. The oneupmanship that goes on is really not healthy, either for the person doing it or for anyone who ends up on the receiving end. I think it's important to acknowledge the reasons why it happens though. When people see others receiving the empathy and support that they want it can lead to feelings of resentment. The one upping is generally a misguided way of trying to make people see that they need attention too. What you are saying about empathy is really important, both as a way of approaching people generally so you don't fall into the resentment trap, and also as a way of approaching those who tend toward the one upping. Chances are they just need a bit of empathy themselves.
ReplyDeleteDefinitely Naomi - it is all about empathy. I guess people seek empathy in different ways.
DeleteHey Carly! Have been thinking of you. Sorry to hear about your poppy. Fantastic post, as usual. I don't see why anyone should be offended by this post, and if people are they obviously have a serious problem. I really love that quote. This is something I have been thinking a lot about lately too. I think we all do this at some stage, it's only human but some people just have a really bad victim mentality. Good on you for writing about it. Much love x
ReplyDeleteHello Beautiful, I finally get round to leave my comment. I love your post and as you know from my quote totally get what you are saying. I wrote that quote last week as I'd had a week of ongoing illnesses and home and mum's Alzheimer's is now so very bad and someone had told me that chin up they were worse off and anyway mum was old, so no big deal. Through my work I see many cases of illnesses, severe trauma and abuse and that was my trigger for the quote. In that you can't compare pain or pretty much anything emotional with anyone- if it hurts it hurts , there is nothing to compare. Thanks for using the quote and referencing me. Love Nx
ReplyDeleteMagic! You've said everything I've been thinking! This sort of thing drives me insane. I mostly get it from non-sick people who are all like "Well I know a guy who has X condition, thank god you don't have THAT!". I'm really lucky that the support group I'm in is actually supportive. Thanls for the great post!
ReplyDeleteExcellent post Carly! So true! I think people do it mainly for attention and sympathy...but at the end of the day, pain is pain whether it's physical or mental. I think if we all listened and empathised with each other instead of trying to one-up each other, it would give us all a soft place to fall when we need to.
ReplyDeleteI too cannot stand it when people say oh there's aways someone worse off than u or I know someone who has what u have and they recovered much quicker than u. It really infuriates me as they are belittling u and your feelings, making u just sound like your puting it on, faking it or making u feel like u should be coping better than u are. We are all only human and are all coping with different things behind closed doors and NO ONE but YOU knows what YOU are going through. Just listen instead of judging or trying to one-up someone. Be the shoulder they probably so desperately need to lean on...just be there...listen and make them feel heard and excepted for who they are and what they're going through.
Another awesome post. If symptoms are difficult, they are difficult, regardless of relative difficulty. I hope we can all take a deep breath and support one another. That's what we really need. Support and validation. Not that difficult to do, really :)
ReplyDeleteThanks Lenka. I am pretty sure the internet facilitates a lot of this one-upmanship too.
DeleteI think the one-up-manship starts with a person who is desperately seeking validation. They're coming from a broken place where they haven't been taught empathy. This is not to excuse them, but it helps me to understand why it happens. When I have been guilty of comparing myself (my pain/situation)I have realised that it comes from my own wounds. I've worked on healing myself and validating myself. It totally doesn't make sense to have a competition about illness or pain - you could never prove who the winner is, but why would we want to? Nobody wins. Great post, Carly.
ReplyDeleteHi Deb - I definitely agree - it's a form of validation. Maybe I do it to, with lesser illnesses. Thank you for your comment.
DeleteBeautiful post. I think this sort of one-up-man-ship is symptomatic of what writer Caroline Myss calls "woundology"...defining yourself (generic "you") by an illness or disability to the point where you don't know who you are without it. So you seek that constant validation of self through validation that you *are* indeed sick or have been through more than everyone else, etc... I've just read the post above mine and realized that I've kind of said what Deb has. I can't remember what book Carolyn Myss talks about this in, but it was very interesting.
ReplyDeleteThank you for the thought-provoking post. I think that illness one-upmanship is part of this notion we have of sympathy scarcity. We believe there is a limited amount of sympathy, love and compassion to go around. So we must compete to be 'the sickest' or 'the most affected' in order to gain the sympathy that we desperately crave. When you move to a model of 'sympathy abundance' (i.e., there is enough sympathy, compassion and love to meet the needs of everyone - which there is!), then I think people stop competing over their illnesses.
ReplyDeleteI agree with these sentiments entirely, however, I am sure during my life time I would have offended many when I only sought to comfort. Again it brings to mind the power of words, how they come out of someone's mouth and can be for good or bad. The power of words can also unite people in a cause, and listening or reading about people telling their stories can be so educational as well as bringing it home with new understanding in a "lightbulb" moment. Keep telling your story - it is valued.
ReplyDeleteI am gifted, orally verbal, and extroverted autistic. I play the flute and arrange and compose music. However, I have an atrocious sense of direction and executive functioning. I do not like one-upmanship. Not at all. Use the tag #PainIsPain so others can acknowledge that one-upmanship is harmful.
ReplyDelete