I have decided to write this in response to an article by Toni Bernhard in the Buddhist magazine Tricycle: 12 Things You Should Never Say to the Sick
Unless we are enlightened beings, there can be no happiness without first experiencing and accepting our suffering.
Unless we are newborns, we will have had experiences of loss, abandonment, despair and suffering. Unless we are able to feel those feelings and move through them, they will become repressed, possibly lead to somatic illness and will at the very least, get locked away in a part of our hearts that is no longer available for other emotions, like love and joy. We must be able to suffer our pain in order to celebrate our joy. There is no escaping it. Trying to push someone past their pain and trying to cheer them up with positivity short circuits that process. It is often not even for their benefit, but out of our own discomfort with the spectre of empathy, and the personal pain that might be triggered, that we do this. I am pretty sure that I have been guilty of this same behaviour from time to time but it only serves to alienate the other person from me.
I think about this in relation to chronic illness. There is stigma around incurable conditions and so, when I approached my “someone” about talking to me for this article, she asked not to be identified. This, however, is what she had to say, on the subject:
“I have been suffering a setback for the past week and simultaneously, am in denial. It doesn’t help that some people closest to me have been feeding my denial for over a year. I understand that their intentions were to keep me positive, but the thing about denial is that unless the thing you’re denying turns out not to exist, you eventually have a rude awakening at some point.
I am awakening to the reality that after a year, I am not cured. I’ve had a good year. I’ve been productive, I’ve become happier despite my situation, I’ve accomplished milestones and I have plans and a purpose for the future. But I am not healed, I am not ‘recovered’ and I am not cured. And, with this knowledge, I need to take on a major challenge.
I am facing the need to return to employment. I have a job offer. The problem is that it requires a huge relocation. I’m not sure a relocation would be the best thing for me right now. I’m not sure my employer ‘gets’ my capabilities and needs. And, I’m not really sure I understand my own capabilities anymore. The other night, I was having a bad day of chronic illness symptoms and I did an unwise thing: I read the Wikipedia entry on this illness. The prognosis is poor. The success with return to work is poor. The amount of adverse impact on an individual’s life and the emotional stress of this illness is higher than any other chronic illness. Great. Just what I needed to hear (not).
When asked what impact reading this dismal view of her future had on her, she replied:
Intellectually, I know these statistics but I have chosen to ignore them. You might say it is denial. (And, of course, you would be right) I chose to call it positive thinking. And, to be fair, I seem to be functioning at a much higher level than many people with this illness. But, that doesn’t mean that I am not aware of how much my life has changed. I met a fellow recently, who has unbounded energy. I used to be like that. I remember my yoga teachers asking what my secret was. They wanted to bottle it and sell it. I certainly don’t have that energy any more. He’s a lovely fellow and so full of life and he has held a mirror up to me and I struggle with the image I see – of not being that person I was – anymore.
I have always been an over achiever – give me anything to do and I will learn to do it and I will learn to do it well. I will put everything into it. I went to an ivy league school and came out with other ivy leaguers among the top 1/3 of the class. I have moved, shaked, travelled, done and accomplished a thousand things.
And I am not that person anymore.
Who am I?
I have been asking myself that question a lot lately. It is certainly not a question one expects to be asking at this age. Okay – midlife crisis aside. But this is not a midlife crisis. It happens to be a crisis that has occurred at midlife. I don’t know what my capabilities are, anymore. The main thing associated with my illness is an overwhelming fatigue that rest cannot assuage. But it is so much more than fatigue. There can be pain, dizziness, body system dysregulation, immune system failure, and cognitive impairment, among other symptoms.
I don’t know what of all of that is mine to keep. And depending on that – I don’t know what my capabilities are, in this world.
I am afraid of trying, of getting back out there – and failing.
I have enjoyed having this time away from everyone. It has allowed me to rest, to retrieve those things like art, music, writing and photography (and lately, meditation and yoga) that bring me joy. It is also, at this moment, allowing me the space to figure out who I am in this changed physical body and who I want to be, in the future. But in that process, there is a lot of grief over the person who is no more. It is like I’ve lost my spouse and I have to learn to go on with my life, with half of me gone.
I am in mourning.
And just as we would not say to a widow: “Oh don’t worry, you’ll get over it, I did,” it is equally less helpful to tell anyone the same thing about an illness that fundamentally changes the way we must engage with the world and leaves us essentially isolated when we are ill.
I asked what friends and family could do to help her feel less isolated:
They could educate themselves and not place the entire burden on me to always explain myself. I haven’t the energy to keep explaining and educating others, let alone justifying my treatment or life choices. I need to preserve my energy for daily living and getting the most I can out of life. I need to be able to be assertive with my needs and I am happy to offer an initial resource but we don’t expect a cancer patient or a paraplygic to keep explaining their condition. We should not expect this from those with chronic illness – even those that are ‘invisible’ and unpredictable, like mine – to do so.
On the nature of an invisible and unpredictable illness:
People think that because fatigue is a key symptom of this illness, they know how I feel. Everyone is tired. But this trivialises the debilitating nature of our fatigue. This illness is not tiredness, exhaustion or burnout. Those alone go away with enough time and rest. Tiredness is just a symptom of my illness. And, I think a lot of doctors use the label of this illness when people present with chronic tiredness and do not have any other physical cause like low iron or thyroid issues. There is no definitive test but Universities in California have found that there is a distict difference in the brain of those with this illness – particularly in our white matter. When I read about that, I wondered whether I would rather know or not know what my brain looks like and what that says for my prognosis.
But, misdiagnosis leads to further misunderstanding of the illness. Those who ‘recover completely’ probably never had it in the first place. The prognosis for this illness is that it is chronic. One does not recover. One ‘manages’ and one works to improve dramatically impaired levels of functioning. Nobody ever ‘recovers.’
I spent the last year in denial about that – hoping that I would find that the diagnosis was wrong. I hoped that with enough rest, I would also be jumping around claiming to be completely recovered. A year on, I can’t say that. And that causes me grief.
On how she sees herself returning to her professional career:
I won’t return to working 36 hour days and to the levels of stress I was under. I won’t return to that. Who would want to? But, I may never return to full time employment. I do need to bring in an income. I am going to have to find a way to earn a living as a single woman on a part time salary. How I will do that is something I don’t know. And that scares me.
And for the first time in the time since I left employment, I must face this hurdle and it is daunting.
And so, after a year of denial and isolation, I’m scared. I am frustrated and angry, I am saddened, I am still bargaining my diagnosis but I can see I need to move to acceptance and to mapping out a new and changed life.
Nobody is where they thought they would be. I never thought I would be here.”
One of the things I hope that I can do with my book on gratitude is to provide it to people suffering from debilitating chronic illness. It would be worse than useless if I wasn’t honest about the down times, the sacrifices and how difficult accepting and coping with illness is – especially given that there exists so much misunderstanding and judgement around it anyway.
What people never really understand is the shame of being unwell in a culture obsessed with wellness. And, every time someone tries to cheer up a person with chronic illness with talk of how they or their friend or their second cousin once removed managed to recover from this illness, it compounds the shame and the guilt of not being able to heal oneself and get well.
Like the article in Tricycle advises, if you love someone with a chronic illness, don’t advise them on treatment, don’t cheer them up, don’t tell them they look wonderful and force them to correct you by telling you they actually feel awful. I would add that this would force them to explain how many days of rest they had to trade for this moment ‘out’ or what they’ve had to sacrifice that you might simply take for granted, in order to look good and be out.
Just let them be who they are because they are struggling to know and to accept who they are – now.
The positive talk in the head of a person with chronic illness needs to come from them, from their appreciation of life and of what blessings they still have, despite their limitations. So, Please don’t tell them to be grateful for what they have – it only serves to highlight what is lost.
When asked about gratitude, our sufferer had this to say:
“I am grateful that I have had more therapy than Woody Allen and I continue to have support because that foundation has given me the ability to be self reflective and given me the tools to cope with whatever I discover about myself.
I am grateful that I have my gratitude practice to keep me positive and I am grateful that I can still be creative. I know that I am blessed with the opportunity to redefine myself, even if it is due to illness. And, in the passage of time and in acceptance of what has been lost, I will come to appreciate what is to be gained in this experience.
I am not there, yet.
And that’s okay.”