You’re Shaming Me Without Realising It
How not to support those with chronic illness.
“Courage isn’t only fighting your circumstances; sometimes making peace with your circumstances requires more courage.” — Sonali Dev
For the most part, hiding my struggles with my chronic illness is easy. I don’t look visibly sick. So unless I voice my discomfort, no one can tell. No one sees me on my worst days, as I’m too unwell to even get out of bed, let alone go out.
However, there are times I must inform others about the state of my health, especially at work, where I need various accommodations to perform my job. Some days, I need to take time off at short notice. On other days, I might need to leave in the middle of the work day. Occasionally, I need to be rushed to the hospital straight from work.
So, by now, most of my colleagues know about my health issues. Despite their well-meaning intentions, they often give me advice that feels distasteful and insensitive.
I remember one particularly frustrating conversation. When one of my colleagues expressed concern over my health, I could hear a hint of worry and sadness in his voice. I thanked him for his concern while assuring him that I had reached a place of acceptance about my chronic condition and he did not need to feel sorry for me.
He immediately responded, “Please think positively. Have faith that you will recover, and you will heal very soon.”
I told him I had no intention of deluding myself into thinking I could recover miraculously. I had accepted the reality of my illness and I was at peace with it. But he insisted I should remain strong and not lose hope.
Although I knew his words came from genuine concern and desire for my well-being, I found them extremely invalidating.
This was not a one-off instance.
Once, a colleague suggested I should distract myself with as much work as possible and stop thinking about my health.
Yet another blamed my introversion for my health issues, suggesting that I “open up to people, go out more often and enjoy life.” (Breaking news: I am introverted, not depressed. I do enjoy my life, and I most certainly have people in my life I “open up to”, and it’s clear why this colleague is not among them).
Again, I understand they were coming from a place of concern, but such advice is problematic for many reasons.
First and foremost, these suggestions make me feel like my illness is somehow my fault.
Suggesting I can think my way out of illness implies that my thoughts caused my illness or that I’m not trying hard enough to recover, invalidating the significant effort I make every day to manage my chronic illness. In either case, you are blaming me for my lack of progress and insinuating that I want to remain sick.
Let me disillusion you. I grieve the life I could have lived had I not been sick. So, it goes without saying that I want to recover, and would do anything to recover, even if it meant eating grass. I have already tried positive thinking, forcing myself to believe I was healthy, speaking positive affirmations, and experimenting with all sorts of alternative treatment options. Had any of it worked, I would have recovered long ago.
Secondly, it’s re-traumatising.
People with chronic and rare illnesses often experience a lot of medical trauma in the process of arriving at a diagnosis.
Unlike acute illnesses, which have a straightforward path to diagnosis via lab tests, many chronic conditions do not have specific diagnostic tests. This means diagnosis frequently comes through a process of elimination, taking years from symptom onset to the final diagnosis.
During this time, patients endure repeated hospitalisations, painful and invasive tests with inconclusive results, and years of trial and error with medication and treatment options. It also includes years of medical gaslighting, wherein they are told that their symptoms are ‘all in their head’.
My journey has been no different. It took me years of appointments, multiple doctors, tests and surgeries to finally arrive at a diagnosis that validated my struggle. Every time you suggest I can think my way out of illness, it reopens wounds from years of being told my symptoms were ‘all in my head,’ perpetuating the medical trauma I’ve endured.
Moreover, what you are pushing on me is toxic positivity.
Adopting an unrealistic, overly positive mindset by denying our reality leads to cognitive dissonance — the internal conflict that arises when we force ourselves to believe something we know is untrue. This can cause profound emotional distress. That’s why positive affirmations rarely work and often do more harm than good. I’ve experienced this firsthand, and I refuse to torment myself further by denying my reality.
“Acceptance doesn’t mean you agree with, condone, or give up. It simply means you stop fighting reality.” — Dan Millman
Lastly, acceptance is not the same as resignation.
Acceptance does not mean I am hopeless, nor is it a sign of weakness. In fact, since accepting my limitations and adopting a lifestyle tailored to managing my chronic illness, I have started to feel much better. I have learned to listen to my body, understanding when to rest and how much I can realistically do, instead of forcing myself to live like a healthy person and worsening my condition in the process.
In accepting my reality, I have found a profound sense of hope: not the false hope of a miraculous recovery, but the hope of living a fulfilling life despite my limitations.
I’ve learned to make space for joy in my life, even amid the pain I experience. My life remains valuable and meaningful, despite being chronically ill. This is not a sign of weakness, but a testament to my strength and resilience.
Who knows what the future holds? Perhaps someday there will be better treatment options, and with proper rest and self-care, I may gradually regain strength and stamina. But for now, I have accepted the reality of my chronic health conditions, and this acceptance has brought me a sense of peace.
So, please understand that accepting my limitations does not imply that I am weak, and while I appreciate your concern, I do not need toxic positivity. I am simply learning to live a fulfilling life within the constraints of my chronic illness.
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