(Loving my new The Walking Dead mug. Suits my state of mind perfectly.)
I've had a bit on an unintentional blogging break of late. My mojo has been somewhat absent and my health not exactly stellar. Sometimes it's difficult to keep hold of that happy place no matter how much you want to or how hard you try. No amount of positive thinking works and you end up just beating yourself up for somehow doing happy wrong.
I've noticed there has been a move in some corners of the ether to stop discussing the negative emotional aspects of illness and in my state of funk, it's really rubbed me the wrong way. I've found myself moving further away from various groups which seem more intent on providing more in the way of inspiration-at-all-costs, rather than a safe place to vent and seek support or treatment information.
I'm all for inspiration, but not at the expense of silencing the patient voice. Illness sucks. At times it is hard to find anything positive to cling to. It is scary. It is challenging. It makes you want to cry uncle and hide sobbing in the corner. There is nothing wrong with these feelings. But there is something wrong with stifling those who voice those feelings or judging those who are in those dark places.
I understand not wanting to dwell in those places. That is not healthy. But ignoring them or pretending they don't exist is even more detrimental. Already we judge ourselves more harshly than anyone else possibly could. But to hear that we are somehow doing illness wrong is another level of guilt to bear.
Admitting these emotions is already fraught with stigma. Inspiration porn tells us that we should all be fighting the good fight. That we should face the world with a smile and a Can-Do attitude. That the sun will come out tomorrow. Turn that frown upside down. All you need is a positive attitude. We are beaten over the head with the permanently perky group-think that has been popularised by pop-psychology and smiling, big-haired, over-tanned pseudo-celebrities on the covers of shelf after shelf of self-help books.
Say it's tough and you might as well have said, "on my weekends I enjoy sacrificing small furry kittens to Beelzebub". That is where the problem lies. Not in the patients experiencing real emotions from living in a prolonged stressful situation. It takes courage to say it's not okay in the face of the overwhelming positive brigade.
Sometimes what you need is one safe place to say it's not okay. That you are scared. That it is all getting too hard. This is where a true support group can come to the fore. A healthy support group is a reflection of the different aspects of illness, part inspiration, part support, part venting, part information etc. We need a place to voice those thoughts and feelings free of judgement. To simply hear that someone else understands and has been there. We don't need solutions. We don't need to be told that we should stop being so negative. That we shouldn't share. That we should always try to find the positive. Some days you simply can't, AND THAT'S OKAY. We can support one another without forcing our own beliefs on others. Without expecting others to be in the exact same headspace as we are.
In psychology, there is a concept known as the Theory of Mind. In a nutshell, this theory suggests that we can attribute beliefs, emotions, states of mind etc to ourselves and others, and understand that other people may have beliefs, emotions and needs that are different to our own. It is this theory that allows us to have empathy for others. It means that even though others may be in a different emotional place to ourselves, we can still provide support and care for them. This theory or its lack can make or break a support group.
We can support one another with a long message or even a simple emoticon, a heart or a sending of hugs. Because sometimes that is all that is needed, especially when your heart and mind are already cluttered and overwhelmed. That lets another patient know they are not alone. It lets them know they can vent and then, that they can breathe.
Positivity has its place. I am a positive person by nature. But it cannot be sustained 24/7 and forcing that is an added burden patients don't need. We have a range of emotions for a reason and each has their place. We are all in different places in this illness journey and we can't expect that everyone will be as sanguine as we are in a particular moment.
This past week I felt fear. Something I haven't experienced in a long time. My bradycardia was the worst it's been in....well, to be honest, it was probably the worst it has ever been. I experienced all the scary thoughts. I realised there was a chance that my heart could stop. That my kids could come home to find me. I was scared to be alone. Later that night when my heart rate had stabilised somewhat I realised I was over it. Really over it. I've been sick a long time. I've had enough.
There is no shame in airing those thoughts. They were a natural response to a damn scary situation. They are thoughts that I know others have had. Airing them doesn't scare others. Or if it does it opens up an opportunity for more discussion and support. It allows others who have been sick for a longer time to share their experience. It means that should other patients have those thoughts at some point they know they are not alone. If they see support on a thread from other patients they learn ways to deal with the messy emotions that crop up with living with a complex chronic illness. They also see that we make it through. That no matter how tough it gets, there is a point where it gets better again. That today I am planning art projects and laughing at YouTube videos. The worry of last week is still there, but it is balanced against the good and put in it's place. Today I can laugh and smile again. I made it through. Today's emotion losses much of it's salience if it's not seen alongside the darkness of last week.
Living with illness is a frenetic ride, filled with complex emotions and situations. We face challenges to our sense of self, our relationships, our entire way of living. There are highs and lows and even the most positive people can find themselves dealing with sadness, fear, guilt and other negative emotions at times. Pretending those times don't exist or minimising another's experience does a disservice to ourselves and to our fellow patients.
Shame and fear thrive in silence. And that's one burden we can change.
I should add I am a strong supporter of seeking professional help for dealing with this aspect of chronic illness. For some, psychologists or counsellors, for others clergy, or professional support lines. Support groups fill a very valuable place in dealing with illness, but sometimes more is needed. There is no shame in seeking help for the emotional aspects of dealing with illness, just as you would seek out a cardiologist to help with heart rate issues or a neurologist for small fibre neuropathy, a psychologist can help with the emotional roller-coaster that is chronic illness.
Love this cover of Tears for Fears, Mad World. Plus it was featured in Donnie Darko one of my all-time favourite movies.
really appreciate what you write and share michelle. a balance in life is needed, you do that well in writing down details. I always nod in agreement when reading your blog, you write whats in my mind. hope im making sense my brain is fogged. take care. xReplyDelete
Sorry you are so brainfogged Em. If it makes you feel better I understood what you wrote completely, one brainfogged person to another ;) It really is a balance, permanently perky and permanently pessimistic are both unhealthy extremes.Delete
Hope you start to pick up soon xx
Thanks for writing this... A few days ago, I left quite a few groups due to this insistence that if you aren't happy all the time then you are doing disability wrong. I think there are two groups - those who are ill and those who are not. Ill disability is different to "normal" disability. I'm fine with needing a wheelchair - it pisses me off when I can't go places, but shit happens. You either find a way around it, or you suck it up. What I find it hard to deal with is the constant sickness/illness/not being able to leave the couch for days. I spent all day on the couch today, not able to leave for longer than it took to take a piss (and even then, I started to stumble around at times) - this is something that most with a "normal" disability can't even begin to comprehend. They just don't get it. Disabilities like dysautonomia/pain/etc - they are a different breed. I've been trying to come up with a name to distinguish us, but I haven't thought of anything cool yet *grin*ReplyDelete
Sorry you had that experience Linda. I know what you mean and I have pulled out of a lot of different groups over the years. Whilst there is a crossover in a lot of what we deal with in disability I do think there are unique problems for both groups. A 'stable', for want of a better word, disability eg a loss of limb vs an 'unstable' complex chronic disability where your sickness can vary day to day has very different challenges. Neither is easy but I do think unless you are experiencing that 24/7, 365 days a year level of continuing and often progressing illness it can be hard to understand what it's like. I always think of chronic illness as a series of little losses that must be grieved. Each time you get over something, another thing, crops up and then another and another. (hugs)Delete
Linda, like you I've wondered how to phrase this apparent distinction. I like stable and unstable. Fits well.Delete
I sent you a private message after reading this, MichelleReplyDelete
Thanks Michelle. When I get back onto FB I'll check it out (hugs)Delete
No shame, no blame, just keep on going, good days! and bad days, remember there is love, just reach out!Delete
Thanks Cookie :)Delete
Well said. Again, you are in my brain, as well as that damn "Annie" song! It's as if what you write comes directly from my thoughts and feelings. Love that you so eloquently put these feelings, no holds barred, into words. You are such an encouragement!!ReplyDelete
Thanks hon. Hehe That "Annie" song drives me nuts. Apparently if you do mental algebra you can stop earworm songs :)Delete
LOL! Mental algebra...I'm screwed.Delete
I know. I'm lucky if I can add 2 + 2, let alone try algebra ;)Delete
So true we can't always remain positive. Life with chronic illness is a nightmare. We are all human and we do need to vent or cry..whatever we need to do to get it out. Holding it in will just make it worse. Each new dx I shut down for a few days cry my eyes out then add it to my mess of illnesses and figure out where to go from there.ReplyDelete
Sometimes I just need to vent we all do. I like live journal used to blog my feelings in it. It helped. But seeing it all in words more emotional. We can and have to take those people like that and just chalk it up to stupidity...I believe in positivity too but if we hold the negative in we will cause ourselves more grief. Hugs <3
It really is the balance isn't it? Talking about the bad parts doesn't mean you're not positive in general. I wish people could see that.Delete
I'm like you, bad news or new diagnosis and I take a few days to process it all, cry, yell, whatever, and than get back on with life. Blogging has been a godsend I tend to find writing helps me clarify my thoughts and by the time I push publish I am usually in a far better head space.
This entry was at just the right time for me. Everyone around me has been telling me to be more positive and look for the good. Well, I am going through a bad time right now, and it is hard to pretend that everything is ok and that I am not scared and in pain.ReplyDelete
Thanks for letting me and others know it is ok to feel bad sometimes!
Thanks so much for dragging out your older posts. The issue I have with the fear and loathing aspect is getting my family on board. I'm unmarried and live alone and have no children which is the exact opposite of all of my siblings, all 8 of them including the one who's dead because even she had a son. They don't understand when I say that stress has an impact on my NCS. They view that as my dysautonomia being driven by stress so if I just get better coping mechanisms, all of my fainting will go away. I wish it were that simple. I point out to them that in late January 2012, I aggravated an old back injury, then February 4th our aunt died, Feb 7 I drove myself 2 hours to the airport to fly to our aunt's funeral and flew back on Feb 9, Feb 14th our mother died, Feb 18th my cat died. During all of this I was a 43 year old senior at Michigan State University. Total number of fainting episodes in this 3 week time period = ZERO. And that was a bit a stress in my life going on. I've found some excellent support groups and I have a talk therapist who I see mostly to have live human interaction. My family is still pushing for me to be under psychiatric care and I can't get it through their heads that neither my primary doc, cardiologist, neurologist, or ENT think I need psychiatric care. For that matter, before my TTT diagnosis in 1999, I had a psych consult and a freaking psychiatrist didn't think I needed to see a psychiatrist. LOLReplyDelete
Thanks for writing this Michelle! It resonates so much with my own experiences and reading it really helps :)ReplyDelete