Living with a long-term illness can be difficult on so many levels but one aspect sticks out: being minimized and dismissed by healthcare professionals. This is unfortunately fairly common for those living with a rare, 'invisible' or poorly understood condition. When someone in a position of power treats us badly, we usually end up feeling pretty stupid, embarrassed and ashamed and knowing the unfairness of the situation and our inability to deal with it at that moment, we may begin to feel resentful and angry. It's often not possible to correct what has happened so the anger may linger, sometimes for years. Indeed, anger can be a pretty heavy burden to carry, especially if you are living with a long-term medical condition (let's face it, you have enough on your plate!).
So, what does this have to do with courage, you may ask. Well, a couple of years ago, I decided to take Dr. Brené Brown’s e-course on courage and vulnerability, partly because I was curious about the e-course itself and partly because I thought the course might inject in me some much-needed courage for my own business start-up. However, what I ended up realizing during this course was something far more valuable: people living with a poorly understood, invisible, long-term illness are incredibly courageous.
Dr. Brown is a Professor of Social Work and Huston University and has studied courage, vulnerability and shame for over 20 years. She's written several books on the topic and has one of the most viewed TED talks of all time. According to her research, courage cannot exist without vulnerability. Chronic illness equals vulnerability, both physical and psychological, and that equals courage. How? Because when you see a doctor, you often don't know how you're going to be met. This is especially true for those of you with a rare, invisible and poorly understood illness. Will you end up being treated well this time or will your concerns be minimized and dismissed like last time? Are you going to leave the consultations feeling humiliated, ashamed and angry or are you going to leave feeling validated and hopeful? You're desperate for help so you choose courage over comfort, at least most of the time.
So, for many people, seeking medical assistance is a courageous act. What's more courageous than sharing the most private and intimate parts of yourself (both physical and emotional), with a stranger; a person who will share little in return (sharing is how trust is built according to Dr. Brown) and thereby risk being humiliated and shamed? Dr. Brown also adds that you should never make yourself too vulnerable with someone you don’t know or trust, yet people living with a chronic illness are forced to go down that road time and time again, exposing themselves to potential embarrassment, shame and distress. If that's not courage, then I don't know what is!
Research also shows that people should never divulge too much information too soon yet patients are forced to do that too, opening themselves up to possible embarrassment, being dismissed and having their symptoms minimized. Indeed, living with a chronic illness means making ourselves vulnerable constantly and vulnerability is not a weakness but rather, it's about emotional risk taking, total exposure and uncertainty. It's also the most accurate measure of courage. I would like to add that minimization is a form of humiliation (You can find more about that here).
So, what happens when the consultation doesn’t go as well as one might have hoped? Many people with long-term illnesses, especially those living with rare, invisible or poorly understood conditions, may have experienced years of difficult medical encounters before they received a diagnosis and that can lead to a chronic sense of shame. Shame is highly correlated with depression, anger and suicide. Dr. Brown says that shame grows in secrecy, silence and judgement. If you douse it with empathy, it cannot survive. Indeed, empathy is the antidote to shame. Acknowledging someone's experience with kindness, compassion and empathy brings hope to patients. It makes patients feel heard and validated. That, in itself, can be a healing experience.
It takes a lot of courage to be ill; to constantly have to stand up and brush yourself off, then go through it all over again. To potentially expose yourself to rudeness or indifference, not being believed, having your problems minimized or told it's all in your head. To feel that few people care or make any effort to understand or problem solve on your behalf. Unfortunately, that is the life for many with a chronic illness.
I live with Ehlers Danlos Syndrome, a genetic and still a poorly understood connective tissue disorder that causes great suffering for many people who live with it. When I was young, I often ended up leaving the consultation feeling exasperated and annoyed. I used to wonder what was wrong with these people and why validation, kindness and compassion was so hard to muster. In the end, just walking towards the surgery made me angry! Listening to Metallica on my Walkman (yes, it was a while ago) didn’t help the situation either. Guys, if you're listening to music on your way to your doctor’s appointment, pick something uplifting or calm inducing. Trust me, heavy metal doesn’t help the situation…at all!
As I grew older, I was treated better, perhaps because I got better at setting boundaries and perhaps because I was extremely well informed. However, the shame instilled in me by health care professionals, and the anger I felt as a result, stayed with me for many years. Thankfully, it's now been banished from my life; I no longer feel angry.
In this blog post, I'm not going to deal with the other side, i.e. the reasons why some doctors behave like this towards their patients. It's important to understand why however, so I'm going to write about that in a future post. In this blog, I simply want to acknowledge that this is a reality for many patients, that it's harmful and that it happens. A lot. Indeed, the 'do no harm' mantra should obviously also extend to minimizing psychological harm to patients, not causing it.
So how do we heal from the fallout of being brave? I’m tempted to say 'forgiveness' (stay with me here) or at least learning to 'let go and let be'. “I would prefer an apology!” I hear you shout. Yeah, me too and wouldn’t that be nice but it's not going to happen, is it? In any case, they say forgiving someone has nothing to do with the person that hurt you. Personally, I prefer terms such as 'letting go' and 'letting it be what it is'. What I'm talking about here is the willingness to unburden yourself, practicing acceptance over something that's already happened, that you cannot change and no longer control (and that doesn't mean you should accept the behavior as okay. It's never okay!). This is sometimes a hard one to get one's head around but in the world of chronic illness, I believe it’s completely necessary to achieve an acceptable quality of life. Unburdening yourself from hurt is a process however. It doesn’t happen overnight but it is possible to free yourself from the anger and shame that may have stayed with you for a long time.
We cannot control how other people treat us but we can control how we deal with the anger we feel when someone has hurt us (and not to mention, learning to set better boundaries, being well informed and assertive, to minimize these things from happening in the first place). So, if you’re in this situation, I would encourage you to work on your resentment and anger, perhaps with a psychologist or therapist. If it's been particularly traumatic (and it can be!), speak to a therapist that understands about trauma and the kinds of treatments that might help you. If you can't afford a therapist, join a support group where your experiences are at least validated.
I want to end this blog post with a classic Zen story that often appears in many different versions from different religious and non-religious traditions. This one is from a book by Jon J. Muth called 'Zen Shorts'.
Two traveling monks reached a town where there was a young woman waiting to step out of her sedan chair. The rains had made deep puddles and she couldn’t step across without spoiling her silken robes. She stood there, looking very cross and impatient. She was scolding her attendants. They had nowhere to place the packages they held for her, so they couldn’t help her across the puddle.
The younger monk noticed the woman, said nothing, and walked by. The older monk quickly picked her up and put her on his back, transported her across the water, and put her down on the other side. She didn’t thank the older monk, she just shoved him out of the way and departed.
As they continued on their way, the young monk was brooding and preoccupied. After several hours, unable to hold his silence, he spoke out. “That woman back there was very selfish and rude, but you picked her up on your back and carried her! Then she didn’t even thank you!
"I set the woman down hours ago,” the older monk replied. “Why are you still carrying her?”
Unlike the older monk in this story, most of us are unable to let things go so quickly and easily but with some time, effort and support, it is possible to free ourselves from that heavy load of shame, anger and resentment. So, give yourself the gift of letting go. Unburden yourself from hurt and anger even if no apology is ever forthcoming. However you feel, always remember how incredibly courageous you are.
If this is something you’ve been affected by, please leave a comment below. If there’s something important you’d like to add, please do so. I'd love to hear from you.
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Dr. Ingela Thuné-Boyle is a licenced Practitioner Health Psychologist specializing in improving the quality of life of people living with a long-term illness. She lives with Ehlers-Danlos Syndrome, a connective tissue disorder and runs a private online (telehealth) practice at www.ingelathuneboyle.com.
Please note: Advice given in this blog is not meant to take the place of therapy or any other professional advice. The opinions and views offered by the author is not intended to treat or diagnose, nor is it intended to replace the treatment and care that you may be receiving from a licensed physician or mental health provider. The author is not responsible for the outcome or results of following their information and advice on this blog.