In the face of a chronic illness, our friends and family can resort to simple solutions: just try and be positive they might advise. Look on the bright side. Focus on what you can do. It’s not bad advice, but it often comes across as out of place and hurtful for someone with a chronic illness like chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM).
Sometimes the drive for positivity can be too much…
The truth is that you can’t experience real joy or peace on top of misery. You can’t make cotton candy out of pain. Only by acknowledging and accepting the pain, the lost dreams, the embarrassments, the anxieties and fears – large and small – only by allowing all of them to be – is it possible to find peace and real joy in the midst of a chronic illness.
Acknowledging the dark side – which is, after all, there in spades – is what’s wanted and needed. Not to be drowned in it or amplify it but simply to acknowledge it – to give it room – is something our culture isn’t very good at. Instead, we’re saturated with “positiveness” messages, perfect social media pages, beautiful people, and inspirational quotes.
The focus extends all the way to illness. People with disabilities tend to be bathed in a kind of rosy picture in the media – they’re courageous warriors overcoming obstacles and inspiring others.
The messy stuff is always kept well out of sight. The day to day struggles to keep going in the face of a seemingly impossible and unwanted future – they are given little attention.
If only being “positive” was all it took. To process the emotional upheavals that come with a profound disability, significant amounts of anger, fear, and grief need to be allowed to surface, be acknowledged and sometimes expressed. These messy, uncomfortable truths simply can’t be wrapped up with a bow of positivity.
Acknowledging that dark side takes courage, both on our part and on the part of our friends and family. In truth, we are often not good at confronting these dark emotions. We’ve been taught by our culture to persevere, to rise above, to keep the stiff upper lip, and not complain. Instead of allowing the darker emotions to surface so that we can consciously deal with them, we often attempt to shove them down, pretend they don’t exist.
It’s healthy, natural and necessary to feel the negative emotions brought on by disability. It’s okay and even necessary to grieve, be angry, be afraid, to temporarily lose sight of hope, to be frustrated, and so many other things. These feelings are there! The journey to acceptance and transcendence of limitations and hardships requires that we acknowledge them. Our experiences deserve to be heard, known and supported.
If it’s difficult for us to come to term with these emotions how much harder it must be for those around us. Understanding the challenges that chronic illnesses bring requires putting oneself in another’s shoes – something that’s almost unconfrontable for most healthy people.
In place of that – in place of offering a real ear to listen to us – most people offer platitudes that they themselves, if they are honest about it, probably rarely follow.
Instead of being offered a safe space to share, be listened to, and express our uncomfortable truths, we often get easy solutions that serve to even more illuminate how much our friends and family do not get it – often deepening the isolation that is already present. So, what starts as a loving gesture to help us be joyful again can end up as a signal for us to hide our true struggles and feelings and isolate ourselves further from those around us.
When faced with such simple solutions, the sick person ironically often has to become the helper, the mollifier, the one responsible for ensuring that their friends/family don’t suffer too much distress (!). “I’m fine”, we say….”Don’t worry about me”….
Toni Bernhard has some ideas about how to successfully deal with friends and family that disappoint
Then, hurt by the lack of understanding, we can sometimes get angry and detach ourselves further from our loved ones – further deepening our sense of isolation and making the problem worse.
People who offer simplistic, inadequate solutions may be producing hurt, but they’re generally not doing so intentionally.
Somehow, for our own good (and others) we must find a way for forgive and move on. In Toni Bernhard’s “How to Live Well with Chronic Pain and Illness“, she recommends three practices for dealing with family/friends who just don’t get it:
- Practice equanimity – notice that the upset you’re having is not with what the person did, but with what you think they should have or should not have done. If you’d expected them to act exactly the way they did you likely would not be upset (!) It’s your desire or unfulfilled expectation that they understand you better, or be more considerate, or be more helpful, or whatever it is, that is primarily causing your pain.
- Practice mindfulness – Instead of getting stuck with your upset, anger or frustration – address it mindfully – notice that it’s happening. Notice that it often rises and falls in waves. (Notice you may want to jump on the wave sometimes!) Then reflect on the many different possible reasons your friend or family member could have for behaving the way they did.
- Practice wishing them well –– not an easy thing to do and something that will likely take practice but practicing wishing those who let you down well will make it more difficult for you to feel anger or resentment towards them.
More than positivity is needed for someone with a serious illness – Laurie wearing eye shades and ear muffs to protect her from stimuli
Forgiveness is always a blessing – an undeserved blessing – that comes from grace and in its purest sense does not require a response. It is truly a gift – a gift which works both ways – and potentially leaves both sides in peace.
Of course, it’s also very good and helpful to focus on the blessings we still have, to hold onto hope, to not give into resignation and bitterness and believe in ourselves. Both the appeal to what’s positive and the negative emotions that come with having a chronic illness are part of the package. We are emotionally complex individuals, worthy and valuable just the way we are.
No matter what your experiences with disability have been, remember that you are not alone. We must support each other and those around us. The ME/CFS community is strong and full of people who understand your struggles. If you feel misunderstood and invalidated, it is one place to share that and get relief.
How do you cope with “toxic positivity”?
- Lori Madeira posts daily on Instagram “MECFSWarrior” and Facebook “Lori Madeira ME/CFS Advocate”
Messages like “Be positive, don’t complain, don’t make demands” are not for our benefit. They are for everyone else’s benefit. ME only wrecked my health. It was society’s response to my illness that wrecked my life.
Exactly!
Thank you so much. This came at a time when my doctor said it was anger that was making me sick. Actually I was angry at her for not telling me more about my medical treatment. Doctors need to read this too and realize when patients are trying to communicate with them. She has so many positives on her side but once in awhile a patient cannot rise to toxic fake happiness. This a daily struggle
Perfectly said.
This is so true. I have been struggling with this just now, so your article came at exactly the right time. Thank you!
Agree with you jimells!! I do not want people have pitty on me, but i would feel more support, if family etc around me, would feel more compasion fro people,if they would just listen, and say like ;i understand, wish i could help and just hold me, ,and say i am there for you.Something like that,but when they say;be positive,it make me feel,they just brush me ff,and do not want to hear,know about my suffering
I think it’s hard for most of us to face real suffering. It requires putting ourselves in another person’s shoes – and that can be scary – very hard to confront. I think some people may think it will brush off on them.
I like what Laurie said. Maybe try and let your family be your family – just as they are – and maybe you’re get some relief. If you do that I imagine that some feelings of sadness and loss that they’re not there for you as you would expect will come up. (It sounds like they’re there already, though :)). It is sad! We expect our families to be there for us always but they’re not always there – they are often there in part – but not all the way.
For me it’s good to know that most of us are probably struggling with the same issue. Understanding that takes my family off the hook a bit.
As I’ve said before, I’ve been lucky. I’m not nearly as sick as many and my family has been supportive. Not in all ways, though. While my father was alive he provided financial support for decades and he was interested in how I was doing. (He was never interested in the medical stuff or in supporting me in getting medical help – which basically meant I didn’t get any; he did, however, over time provide a tremendous amount of financial support to keep me on my feet.)
My Uncle has been similar. He’s not interested in learning about ME/CFS or how it has effected me but he has provided significant help in a multitude of different ways over the years. (He even came up with the Phoenix Rising name).
For 40 years the rest of my family has never breathed a word – at least not to me – suggesting that ME/CFS is not real. They’ve also never really been interested in how I’m doing. Basically ME/CFS was not talked about. Only my father was to some extent. (My mother passed away quite awhile ago).
On my part I have to take responsibility for the fact that I didn’t do anything to try and change that. I would see them at family get-togethers and I imagine that I seemed fine. I just left it alone.
My partner, I hope she doesn’t mind my saying, has a lot more courage in this area than me and she’s made it something of a goal to have my family get how tough ME/CFS is. My sister later told her that she had no idea! For me I had to get used to the difficulties ME/CFS poses being laid bare in my family. At first it was rather cringe-inducing! Now I’m glad it’s happened – that elephant is no longer nearly in the room as much.
I think the inability of families to provide true emotional support is much more common than the other way around. So maybe take some solace in the fact that your family, like most families, has a hard time getting it about this disease. They are not alone either!
We are not trained in this society to know how to be supportive in the face of a chronic illness. I think most of us, patients and family, are probably pretty much floundering much of the time.
Could this finally be the answer?
https://www.prohealth.com/me-cfs/library/groundbreaking-blood-test-identify-chronic-fatigue-syndrome-90986
A valuable report provided by HEALTH RISING and another reminder that CFS is the “neglected disease.” I have the book on order
Many thanks Cort
If I hear be positive from a relative stranger once more I’ll go nuts. It’s a throwaway phrase for sure, i think I AM as positive as possible so don’t want to be just tossed aside. I want all of me to be heard.
It is a throw-away phrase! I think it’s a way for them to take control of the situation for themselves, pat themselves on the back for providing some help and then get out of there!
A lady I worked with said “oh I had that but don’t have it anymore so you’ll be fine!” I was so annoyed at the time. I doubt she had ever had fibromyalgia. I noticed whenever anyone had an illness she had had it too – yep, life was all about her and from what I can gather, still is.
Pris,
I am in the same place. I’ve been very ill since 1993 and disabled since 2001 (39yo). It was a series of medical errors and damage from RX drugs that started it all. Of course, no allopathic medical doctors will discuss that part of it for fear of getting pulled into litigation (which I have NO intention of pursuing).
I have been harmed by medicine AND abandoned my allopathic medicine, which I know is fairly common. I have FOUGHT my way through decades of pain, worsening illness, and brutal isolation only to be refused the low dose pain med that kept me able to get out of bed. Another abandonment.
My entire family is dead now, including my only sibling, father, and 2 dogs in the past year.
Be positive? Gratitude? No. I will never allow myself to hope again. Death would be a welcome event.
I’m a little confused by the recommendations from Toni Bernhard’s book to “practice equanimity” – I expect the person to say what they’re saying, and actually, it is still hurtful. It seems like this article is saying that it’s fine for other people to say what they like, even if it’s damaging and hurtful to the person who is unwell, but the person who is unwell should just let them continue to do it because it wasn’t the other person’s “intention” to cause harm. I find this a bit ridiculous – whether it was their intention or not, they still caused harm, and should be told this – only then is there a possibility that the behaviour will change. Continually letting toxic messages be spoken into your life is not going to be helpful for anyone.
I understand your confusion Natasha. Maybe this might help. I had a father who was not a good father. He continually disappointed and hurt me emotionally. One day I realized that in my head I had a “perfect father” and the real one would NEVER measure up. I let the perfect father go, let my Dad be my Dad, but changed how I acted with and responded to him. I looked for other people to give me what I needed from “perfect Dad”, who were willing and able to do that. I let myself see what real Dad was able to give me, where we could connect if even a little. Once I took the pressure off, was more realistic with my expectations, the hurt lessened considerably. It did not condone or excuse his behaviour. It took a long time to grieve not having the Dad I deserved to nurture and protect me. Taking the responsibility off my Dad’s shoulders to be someone he was incapable of being was freeing.
So well said….
Letting your Dad be your Dad – just the way he is – wow I am going to remember that one.
Determining what our expectations are can be very enlightening as well. As Toni notes and as I’ve heard elsewhere – trying to understand where the other person is coming from – with understanding that everyone has a past that informs how they will react – can help. Few of us come to anything cleanly.
Hi Natasha,
I know what you mean, but I also agree with Toni Bernhard.
I sometimes feel annoyed that on top of being sick 24/7 we also have to accept the way people speak to us such as the platitudes described. But I also know that most people saying them are not intending to cause harm or upset, but as you say, unless we tell that person they will never know.
It’s a catch 22 really.
But for myself, I hate conflict. I hate confrontation so I tend to adopt , as best as I can, the trait of forgiving the person with the annoying sentences.
Saying that, over time, I have been able to tell people gently that I dislike to be told to ‘stay positive’ because if they were in my shoes they’d have a very hard time staying positive believe me! There’s only one member of the family that continues to say that to me, but she’s getting there and has finally ‘got it’ that I’m truly chronically ill!
So, I do tend to practice Toni’s suggestions mainly because I can no longer be bothered to explain. I’m so over it as the Americans would say!? I’m learning to stay in a place of peace and forgiveness as it’s better for me, my body and my mind to be like that.
Now, with visitors, I tend to try and distract them from talking about me and my illness by saying I’m too exhausted to talk so tell me about your life and what’s going on!
For a long time I sort of took on responsibility for how my visitors were feeling as it is hard to know what to say, especially when we are not getting better. The ‘hope you get better soon’ is another one of those phrases that gets me uptight because unless a miracle happens I very much doubt that is going to happen. But again, I’m practicing graciousness and I try to simply say thank you. I still sometimes have a hissy fit once they’ve left and then my husband reminds me that always remember to think about their intention. And pretty much all of the time, their intention is good.
I recently was interviewed by a university student for her dissertation for her media studies degree. She has chosen the subject of ME as she herself has it, and she wants to raise awareness. I did t realise it was going on YouTube but if you fancy a look here is the link!
https://youtu.be/NHcXVn_W_fg
Much love
Fiona.
Thank you for your words. I watched the video on You Tube. I see a very kind, fun loving and extremely smart woman explain the 359 degree turn of all she knew of herself, life and plans for her future with her husband. I see her, I know her and I see her as having accepted so much to get by, but seeing what others have had to accept too as the hardest of all. What a powerful woman. I see she once loved to smile and laugh and that was infectious to others around . Who you are is still here. Remember you are loved for all of who you are. Then and now. I wish you peace as you need it and presence among others when that is your want.
Underneath that I think you still have an expectation or as Toni put it – a desire – that they will or should act differently.
I very much agree that communicating that someone is saying something that is hurtful and explaining why makes perfect sense and should be done.
Dealing with toxic people – and not having their toxicity – not yours but theirs – affect you, is a more difficult situation.
Thanks so much, Lianne, Cort, and Fiona. This has clarified things a bit more for me, and given me lots to think about. Perhaps it’s a bit of a case of “try once” to tell the person what they’re saying is hurtful etc, then if they continue doing it, give them the “benefit of the doubt” that they’re not trying to be hurtful but just aren’t in a position to fully understand and accept the situation, and then use the techniques Toni said about in order to maintain the relationship without causing yourself to become bitter about it? Thanks for all your suggestions everyone – I’ll keep working on it!
My question is: What is the point to try and care a relationship (given the amount of energy it takes) with a person who is not willing to see you and what is happening to you?
With lots and lots of tears, I have dropped most of my former friends: They don’t want to ‘see ME’.
With my limited resources I am trying to make new friends, they are very scarce, but they know me as my new ME, with all the limitations that I have, but they are not constantly asking me to be the old me (without ME).
It may be sad and may be seen as a defeat, but I see it as another way of ‘pacing’.
???
What a beautiful article. It truly touched my heart and brought tears to my eyes. Oh, to be heard and accepted WITH my illness! I am trying to embrace that it’s ok to be ill and be honest about it, not cover it up to make others more comfortable. When family or friends ask how I am, now I often say “Not that great”…..or even “truthfully kinda crappy” or “hanging in there” I do it lightheartedly but at least I’m not just outright lying and saying I’m ok, when I most certainly am not. Of course, that’s with my friends and family. I do believe that people that I socialize with outside my friend/family circle don’t REALLY want to know how I am…lol.
People who make these comments have no idea what everyday life is like when you live with these conditions. Let’s face it unless you have them you can’t comprehend the effects let alone how being told to “think positive” when you hurt from top to bottom, have brain fog & sensory overload to say nothing of feeling as though you haven’t slept for a month when you’ve only been awake 10 minutes, struggled to the bathroom & fallen back into bed exhausted, feels!!!
Their ignorance is bliss….. for them!
This is an excellent post! This perspective is long past due – thank you!
I have two small quibbles with it (but not enough to repudiate my rating of ‘excellent’):
1) Forgiveness exhortations, imo, can be similar to ‘be positive’ exhortations. It’s important to differentiate those for whom forgiveness is warranted: people who express remorse, repent, and offer reparations (can be as simple as saying ‘I’m sorry’) or people who don’t know better; from those who intentionally and knowingly cause harm. Forgiving the former is good for our soul, our health and our communities; the latter is harmful.
The appropriate response to the latter is seeking justice, corrections and reparations. (PACE study – I’m looking at you.) We can ‘wish them well’ and seek justice at the same time. Experiencing appropriate consequence for harmful actions is what allows perpetrators to recognize their actions and change their ways – to become better people. Getting away with harming others is almost as harmful for the perpetrators as it is for the victims. No reasonable person would want that for themselves.
2) ‘Just practice mindfulness’ can be as bad, or worse, than ‘just be positive’. Toxic, in fact.
Mindfulness has a very dark side for some people, and should be practised with caution, especially by those in particularly difficult circumstances. Thankfully, if one googles ‘dangers of meditation’ or ‘dangers of mindfulness’ there is now a lot of information (that wasn’t there years ago).
Mindfulness is contraindicated for many people – especially those with a history of trauma (especially with dissociation), or a family history of severe mental health issues. I would suggest that severe MECFS would qualify as trauma for many patients. And many people with MECFS have a history of trauma, so even more reason to be cautious. But these problems can crop up even for people without those histories. More teachers, and practitioners, need to be aware of this and watchful for abreactions in their patients.
Dr. Willoughby Britton at Brown’s University has been studying the “shadow side of contemplation” in ‘The Dark Night Project’ (now renamed ‘The Varieties of Contemplative Experience’).
https://www.theatlantic.com/health/archive/2014/06/the-dark-knight-of-the-souls/372766/
Ironically, people get into dangerous places with mindfulness because of the ‘just be positive’ associations everyone makes with it. If, as your post says, we just allowed the negative ‘to be’ and gave it room, without having to push it down or away and deny it, we’d have a better chance of finding real balance in the midst of it.
I agree. I noticed that when I started letting the fear bubble up a couple of years ago I was surprised at how intense it was! Like with anything with this disease I think its better to start low, go slow and better ready to back off. It is potent stuff! A little bit at a time is best.
Doctors also say things like this, not only friends and family. This article is necessary and long overdue. This illness is actually for the severe, hell on earth. Yes, it is hell on earth, because the person is in torture around the clock: flu feeling, IBS–inability to eat, toxic feeling, nausea, weakness, malaise of the worst order, and entrapment–the person is unable to go outside, to leave the house. There person barely manages in the house. The question then inevitably arises: how long can I go on like this? Totally dependent on others, no matter how lovingly they help. And with no normal life, no normal stimulus or any realisation of dreams and the things one has worked hard for, very intense thoughts develop: Now more than ever seems it rich……(I won’t finish Keats” line). When when will the researchers, and goats, and pharmaceuticals understand that a whole generation of young people has been decimated.
To be confronted – physically, emotionally and mentally – to be confronted in really every way; it’s an immense, immense challenge.
Cort, this is one of the very best things you have posted.
So very, very true……….
BTW, British Columbia mental health’s & Simon Fraser Universities publication ‘Anti-Depressant Skills Workbook’ (available on line) states always being positive is not good.
http://www.bcmhsus.ca/Documents/anti-depressant-skills-at-work-self-care-guide.pdf
It says being realistic (like your post emphasizes) is better as that attitude helps us to do what we can to improve our situation.
Absolutely…right…on…the money! EXCELLENT MESSAGE! Article clearly written by someone who has walked, (or crawled) in our shoes. Denying reality doesn’t make it any easier for those of who suffer. This malady is degrading, ill-defined, and nearly impossible to explain.
It’s been nearly 29 years since I was diagnosed, and each day is a tetras puzzle asking me for patience, endurance, stalwartness, and courage.
Some days I don’t have it. But this is what I know. This day will pass (just like gas) and tomorrow, who knows what will appear. Making peace with that is my daily goal. Some days I succeed, some days I don’t. Assuredly, something like these articles will come along and buoy my spirits.
Darkness, anger, frustration, tears, being overwhelmed? It’s a smorgasbord I didn’t ask for. So, what to do? Soldier on, even if that means only a shower. As for pacing, (one of my least favorite words) we have a 97 year old parent in hospice, one 87 recently hospitalized, now temporarily (?) in a nursing home, and another 90 with liver cancer, I am constantly reminded of the fragility of life, what I am grateful for, and keeping a sense of humor in the midst of a move back to WY.
Wars, a Depression; they’ve seen it all. As for me I count their example as mine to follow. With the invisibility cloaking this condition, I am a silent warrior, ever mindful I can succumb. But I cannot. Someday, others will rally around answers for all of us, and I will rejoice. In the meantime…
Pacing? Yes…as I can, when I can…ever mindful of grief that surrounds us. From this disease, from a world filled with it. And yet..I catch glimpses of wonder and delight, and the goodness in serendipitous happenings. I count my blessings daily, ofttimes with gritted teeth, but I do count them.
Again, Cort and Company, keep going PLEASE. You are needed, and deeply appreciated!
I have been consciously allowing my fears, my upsets, even interestingly enough – my embarrassments – to come up up a bit.
I have found that I am sooo embarrassed when I am too fatigued or cognitively challenged to communicate the way I want to or think I should. I’m pretty sure that in some circumstances was better at communicating when I was 20. It’s cringingly embarrassing…I didn’t expect that. I didn’t even know it was there. It’s really there…
Also the fears. So many fears that I’ve clamped down on….I’m letting them tingle up as well. So many fears….
It does help to allow them to surface….It allows me to relax a little bit.
I make a bit of peace with the pain, the fatigue, the fears, the embarrasments, etc. one day – and the next day it starts all over again :). The challenge continues.
Well said, Cort! Hugs to you!
it’s hard when you are intelligent and you’re having a bad day and you sound like you’re crazy or have dementia. especially if you’re young. i think it is the most scary and embarrassing symptom. you can see the confused look on people’s faces. since we usually look fine it’s more confounding for them and we are doubted and disbelieved. then we feel shame and isolation.
I remember my 20-something daughter telling a new friend, “I used to be smart” when she was embarrassed by having said something she didn’t mean to say. I wanted to make her feel better and say “You still are” but I knew that doesn’t help. In fact, when we lived together and both were in the throes of CFS, we’d try to figure out who had screwed up the laundry or forgot to put away food, etc. and found neither of us could remember.
It’s particularly rough when you were proud of your intelligence before and then lose it but the fight shifts! Now the fight becomes being able to handle all these adversities – what a much larger fight that is!
Thank you Cort and Lori for this post, which was beautifully written and rings so true. It is a challenge to navigate the emotions of living with chronic illness, to acknowledge the grief and pain but at the same time not be overwhelmed by them. I allow myself the meltdowns knowing I will bounce back emotionally and feel hopeful again. Its a rare friend, family member or even counselor who knows how to respond to my darkest emotions. I have found a lot of comfort with sharing feelings with a couple of my friends who are also sick. One blessing about all of this is that I am not afraid to listen to others who are hurting.
Thank you, Lori and Cort! It’s frustrating for those with chronic illnesses that are so life- changing to feel so misunderstood so often. But I’m also sure it’s frustrating for loved ones to know what to do when an illness lasts so long. Having just a few people in my life who want to understand, and ask what they can do makes all the difference in the world! Your article will surely help many people who want to understand, as well as those who are misunderstood!
Thank you for addressing this subject. As a person who became sick with Guillan Barre syndrome in 2009, severe chronic fibromyalgia and fatigue have been my constant companions.
This web site has helped me feel a community of my tribe exists!
I recognize for myself that these last 10 years have been a spiritual journey, but to be reminded by folks and especially friends who are in the medical profession offer platitudes such as “stay positive” shows a lack of compassion and at best , ignorance! Oh! and don’t get me started on the word PACING!
This is the medical (Kaiser) mainstream code word for “we really don’t know how to help you” you need to do this. Here’s to the courage it takes all of us everyday to doing the best we can! Thank you for phrasing this article with such thoughtful ness.
Simply thank you!?❤
Its straightforward Denial; so much easier to hold the individual responsible than to confront the reality of pain and the irresponsiblility of the systems and instituions and their drivers.
For those able to read you may find Barbara Ehrenreich, How the Relentless Promotion of Positive Thinking Has Undermined America.
And may just add that those of us caught in the ‘blind spot’ of caring, we get a daily dose of it too, also just when we could do with understanding, compassion and actual HELP.
Thankyou Cort and Lori, and to all who have commented…… how strange something
so obvious has been waiting to be said…… the freedom to grieve, to cry, to admit,
to not “appear” continually, to be. Toxic Positivity says it all, and even before I came down with CFS/ME 21 years ago, I was not in tune with this Positivity stuff. It is hard,though, when the person you live with is scared of expressed emotions. For a while now my most
disliked expression is “All Good”, it if rife in Australia, everything is “All Good”.
Cort, I so appreciated you writing about your embarrassment about being cognitively to communicate in a manner to which you were formerly accustomed.
Honestly, it doesn’t show at all in these forums, but I understand so much what you
feel. I am so exhausted these days, the words just won’t come, and my hitherto
poetic nature is saddened to be thwarted constantly. Well, I just want to wish all of
healing, or the acceptance of not healing, but mostly to feel love in our hearts.
You see, half the words are missing…… ha ha.
it may be easier to hide the neurological glitches when you are writing as opposed to someone who recognizes you somewhere and starts asking you questions and it totally throws you off and you can hardly speak or function.
Thank you Lori and Cort for this article, it so very good for the soul and spirit. I have lived with CFS for 25 years and have suffered the loss of friends and acquaintances, largely through a lack of understanding and appreciation of what I am experiencing and living with. Like other comments here, I, too, am over the “cult of positivity”, the constant references to pacing and the insulting comment that its all in the mind. I am fortunate to be surrounded by the love of a close family; those who care for me and nurture my spirit. In many ways, CFS has been a spiritual journey, one in which I have learnt more about myself than I might otherwise have done so. Living with an open mind and with love in my heart is the best I can do. I also thank Cort for the informative articles and ideas on how we might deal with CFS, FM, ME, etc. It is also heartening to read of others in similar situations who are travelling their journey as best they can.
Simply put, thanks for acknowledging the feelings that we all feel. One of the best things I learned from my first support group in the 1980’s was to go ahead and grieve for the life you lost. Best advice ever! Feel your feelings and don’t ever apologize for that ?. Wishing everyone better days ahead.
Thank you everyone and especially cort for your continued sharing. I agree the toxic “just be positive” “all good” and the medical “pace yourself” and for me the one that has made me stop sharing is “have you tried…” usually the latest fad diet or healing idea around not that some of these dont have their place and often are suggested by someone meaning well but can be sooo frustrating and energy zapping though to listen and navigate responses that dont offend that it makes you just stop wanting to see people and hide away till you feel better which often doesnt come.
Wow! I am humbled and grateful to find so many other people with the same frustration caused by others’ miscomprehension and dismissal of the gravity of our illness. And to know how many others have received the “sermon” that our attitude is what is the problem, to which I simply reply that I will show happiness again when I’m not in pain. I couldn’t help but notice the synchronicity of the topic of “toxic positiveness”, because last night I reread an amazing article by journalist Chris Hedges who described our “toxic positiveness” as being “magical thinking” that prevents us from really looking at our societal problems. Sending love to all the really brave souls saddled with a nearly undefinable problem that never goes away and alienates people from us. (But we have lived very deeply and have learned so much on the way.)
I have read many brilliant posts on this site, but this one absolutely touched me to the core. Thank you so very much for highlighting so honestly this facet of living daily, often for decades, with this isolating and life changing disease.
I wish health professionals could read this.
Thanks Lori and Cort for this blog. It’s one of the best mind and spirit pieces I’ve read in a very long time.
So many people talk about mindfulness, being whole, excepting ones self, be greater then the illness… …and then say we should deny over half of our feelings, life conditions, suffering and personality. It’s like they promote enlightenment by giving away blindfolds.
As to being angry, especially with the people I love, I learned to no longer feel guilty or ashamed. It’s a natural mechanism to give us a short lived boost of much needed adrenaline when we simply have far too few energy to carry on the little thing we are doing and needs to be done.
This anger doesn’t express our general feelings toward them. There is no need to waste energy and opportunity on suppressing this anger. Just making sure it doesn’t affect them too much and and you learn to keep too strong bursts of anger under control is sufficient. And that’s easier done when allowing you to feel it inside for time to time, when allowing you to curse upon beloved ones with your inner voice from time to time. It’s an inner expression saying nothing else then damn, this life is often exceptionally challenging. Afterwards, you’ll be a little sunnier person lighting up both your and their lives a bit then if you don’t.
As to us being positive or negative, the fact that we still are alive under such extreme conditions proves that we are people that go on and on despite all the negative experiences this disease gives us on a daily basis. With very few outlook for it being a lot better in the future, that is a testimony to our strong spirits and positive take on life.
Jimells, you put it so well!
Yes, yes, yes. Thank you Cort and Lori! I am reminded of a book by Barbara Ehrenreich titled, “Bright-sided”. Ehrenreich wrote of similar challenges she faced when she received a diagnosis of breast cancer.
Back in 1986 when Cheney and Peterson experimentally tried IV acyclovir and teachers with the “mystery malady” recovered, “positive thinking” had nothing to do with it.
We thought this would put a stop to the psychologizers.
They were just getting warmed up!
Erik, so glad to see you here. I hope you are still climbing mountains. The
I was just reamed out by my doctor for being angry and upset. thanks I needed this
I am working on a Word document/outline today, and I had reason to type a colon followed by a closing-parentheses. (For a heading to a section that I wanted to de-emphasize by putting it in parentheses: not a typical maneuver.) To my surprise, a tiny round smily face “emoji” that I’d never seen popped up and automatically replaced the two intended symbols. I had to figure out how to get around this function to do what I had been originally intending.
Then I found myself thinking back to this blog this morning, and wondered…can you make a real frowny face pop up by using an opening-parentheses for the mouth? 🙁
Answer: No.
A ho-hum face with a slash for the mouth? :/
No.
What about a winky face to officially indicate subtle sarcasm? 😉
Nope…
…Only a smily face…
…100% positivity is often the only option we’re given. 🙂
Ha, your blog is clearly more sophisticated than my Word program…it automatically turned (almost) all of my archaic symbols into the real deal after I submitted my comment. (Except for ho-hum face.)
…Maybe the sheer variety of emoti-cons now encoded into (most) devices/programs can give us hope that the world may be changing…and opening up to subtler realities…maybe we will all someday feel more free to express all sides of ourselves in person as well.
I guess I’m not as good a person as everyone else is. My family has not, after 19 years of this, ever understood me or this disease. I cannot be ” gracious”. I am running out of money fast now. This is a reality and why I stopped using holistic medicine and buying books. My out of pocket medical expenses has now run dry. Poverty is real and terrifying and I am alone. The only option left is a nursing home. I am only 60.
Oh Susan Frei, my heart really feels for you. What a tough journey. The truth is that it is definitely easier to be gracious or “good” when you are not dangling over the edge of a cliff or in a sinking boat. I am so sorry your family does not understand or help and you are feeling so alone in your struggles. Hugs and love sent from my heart. Wish I could do more <3
Susan, I really do feel for you! I was just recently diagnosed with fibro after years of pain and many doctors. I would love to help you too. I’ve been living at my sisters, her husband and nieces house for two years. And nobody “gets“ my illness. What state do you live in if you don’t mind me asking?
Susan, I really do feel for you! I was just recently diagnosed with fibro after years of pain and many doctors. I would love to help you too. I’ve been living at my sister’s, her husband and niece’s house for two years. And nobody “gets“ my illness. My sister is famous for saying “think positive“ and she cannot stand to hear me complain but wants me to complain to her husband so that it makes it easier for her to justify to him my living here. I sold everything I own and I’m barely getting by even though I don’t have to pay rent which I’m very grateful for. But it’s very comfortable living here because I feel like I’m walking on egg shells. What state do you live in if you don’t mind me asking? I’m 54 feeling a lot older.
Thank-you Lori and Cort. This has been one of the hardest things for me to deal with in the 25+ years of having ME/CFS. Thank you addressing this difficult issue.
All so true. 45 years of FM has left me unable to deal with the stress of this. I can’t fight the fatigue, pain, mobility problems as well as engage in false cheer. I’m alone and rarely see most of my family which I understand. But this week I saw my GP who is playing the same game. I really need help and I get a chirpy ‘wow, you’re so much better, got dressed and walked in here’. Been bedridden for 3 days after that effort but can’t face giving her elementary education in FM.
Net result is definitely not positive.
For Susan Freil who wrote on May 3, my heart goes out to you, especially, how can you “be gracious”, how could you ever think of CFS/ME (as I can’t) as a new spiritual
journey, as someone mentioned. My “Journey” dropped out after 21 years of this. I know the fear of money running out, the only reason I can take wholistic is because I got an inheritance, and that is disappearing, and I rent. Oh Susan, I am so sorry, the thought of a nursing home, haunts me too. If I were well and had money, I would come and help you. That your family has never understood you is a sadness, that they don’t understand the illness is a terrible sadness. I long to have faith to sustain
me as I used to, but no more. I can only send you empathy and love, Susan, and
tell you that it was a brave to write what you have. Love to you, Billie (female from
Australia)
For Susan Freil who wrote on May 3, my heart goes out to you, especially, how can you “be gracious”, how could you ever think of CFS/ME (as I can’t) as a new spiritual
journey, as someone mentioned. My “Journey” dropped out after 21 years of this. I know the fear of money running out, the only reason I can take wholistic is because I got an inheritance, and that is disappearing, and I rent. Oh Susan, I am so sorry, the thought of a nursing home, haunts me too. If I were well and had money, I would come and help you. That your family has never understood you is a sadness, that they don’t understand the illness is a terrible sadness. I long to have faith to sustain
me as I used to, but no more. I can only send you empathy and love, Susan, and
tell you that it was a brave to write what you have. Love to you, Billie ( from
Australia)
Tears rolling down my face as I read this blog and all the comments But grateful tears they are indeed! Thank you so much for addressing this rarely mentioned and painful issue that I’m going to call one of the (worst side effect) that patients with this chronic illness has to face ! I truly think I can deal with the pain fatigue cognitive problems etc.etc. Side effects better than the positivity sermons and the you just need to get out more and get more exercise etc.etc. from lack of understanding and no interest in educating themselves (no one has time for that) ! When we are already feeling ashamed embarrassed guilt of not being able to do the things we need to do and used to do so well I hurts it really hurts to be made feel even more worthless when we can’t achieve what they think we should do when they have no idea how truly hard we try ? It’s a constant battle to try to make others “get it” ! We need to share share share this and maybe just maybe it could enlighten those who don’t realize how much it hurts when people say all those things like “You have to push yourself” “That’s what I do I push on thru my pain “ Not understanding that if we PUSH WE CRASH ! Thanks again for a very much need post!!! Love hope and blessing to you all