“I’m fine” that’s what we say, isn’t it?
Isn’t that the only socially acceptable answer in the rush rush rush of productivity we’re all caught up in? “I’m fine, i’m coping, i’m achieving, i’m holding it together”
I’m fine means so much and so little. At work, at play and in day to day life, I can plaster on a smile and say “I’m fine thanks, how about you?”. For me this overly utilised statement mostly means either; ‘I’m not fine but I’ve gone to quite a lot of effort pretending I am so I’d like you to play along with me’ or ‘I’m actually not fine at all and if you show me any kind of sympathy I will cry and i’m worried that possibly I’ll have forgotten how to stop’.
Does this sound familiar?
I’ve noticed friends tend to respond in one of three ways;
1) Accept that all is well and continue the conversation, asking about aspects of my life, telling me about their recent successes and frustrations. These conversations are great, they are important reminders that there is more to life than pain. Life is still out there, and my troubles now seem small and insignificant in the grand scheme of things. I feel normal. The problem with this is; the pretence feels fake, I’m uncomfortable with how accomplished I’ve become at deception. It’s also tiring to maintain, who did I confide in and who did I smile and wave to?
2) Then there are those that notice that all is probably not fine, ask me again or question my response but continue to go along with me. This is great too. It reminds me that people care, and i’m perhaps not such a master of disguise. I like when we can pretend together…sometimes.
3) Then there are the brave souls who call me out on the lies and ask me what is wrong or just approach and hug, forcing me to accept their compassion. This is my favourite and yet most uncomfortable response. Someone I know who I don’t see often always embraces me regardless of the situation, how I look or behave, I feel both disarmed and vulnerable, but loved and accepted. I want to both welcome it and run away.
I’m sure these experiences of pretending everything is ok for the fear of falling apart and being exposed as not winning at life, isn’t unique to me, isn’t unique to lupus, or even to chronic illness. Just thinking of people I know many are facing tough times in their lives but still show up with smiles on the faces ready to make witty conversation.
So why not just tell the truth in the first place?
For me having lupus is a little bit like when I had a miscarriage, it’s not a secret but it doesn’t make great school gate or coffee shop conversation. I don’t know how to say “i’m not fine, because… “. I feel bad for dumping that information on you when I know you’re also having more than enough of your own struggles. I worry you’ll judge me, tell me others are worse off, I know this already, guilt guilt guilt!
Almost a year ago I started telling people I was in pain, at the time doctors were flitting between dosing me up with opiates or trying to convince me it was all in my head. People were sympathetic but after a while I felt I should have news of recovery to share. People told me I looked better so I thanked them and said what we both wanted to hear. I’ve read a lot about how people with chronic pain/illness feel they are judged by others, that they’re somehow viewed as weak or malingering. I don’t feel judged by others, only by myself. I want to have that good news conversation. I want this to be temporary. Telling the truth somehow makes that seem less likely.
Specifically to lupus, some days I feel good, I start to think ‘its gone’!!! Only to wake up the next morning to discover its returned and this time some other body part hurts or some other function has temporarily developed its own agenda. So telling the truth becomes hard, “I feel terrible today, I can’t stand up long enough to cook for my children, or stay awake to see my husband” becomes hard to believe when the next day I can go to work, dig my garden and walk my dog. Again, I feel a fraud. So do I make out all is well or all is not well? How can it be both?
I also worry people will think of me differently, see me as weak or vulnerable or incapable. Now I realise this doesn’t do justice to the people I know. But I think what ever our circumstances we all live with a little bit of fear that we some how don’t measure up to expectations yet somehow everyone else does.
When I started telling people about lupus, they all reacted in the exact same way. Concern, sympathy, offers of help and then went on treating me the same way they always had. And thats the lesson right there. Tell the truth, be brave, write it down if you can’t say it out loud. People may surprise you, maybe that person will be you.
I’ll leave you with one of my all time favourite quotes (i’m paraphrasing from memory):
“tell the truth, even if just because its the easiest thing to remember”