A few weeks ago, my sister and I were in the lounge after dinner trying to unwind after work when she suddenly asked me…
“How can you take a nap?” She looked at me with a blank curiosity in her face. ” I can never take a nap…” she continued.
I knew she was asking this because of her current work situation, which has been madly busy and has demanded her to work overtime and everyone can see how exhausted she really is.
Everyone is exhausted and tired these days, even when you don’t have a chronic illness. The world never stop ever since the internet and digital world came into our life. We are constantly bombarded with billions of information every second on a flick of a portable screen in our hands. The world is at our thumbs’ reach these days. Emails and social media demanded us to respond immediately. It is an excruciating challenge to switch off and let our body and mind rest.
But this question genuinely hit me hard.
Nearly 2.5 years into my diagnosis, even my closest people, the ones who live with me before and after my diagnosis… the ones who see my everyday… the ones who are taking care of me… they still cannot grasp the extent of how lupus affects the life of the person who lives with it.
The only answer I could muttered to her was this…
“It’s not a matter of can or cannot… it’s simply that my body shuts down and I cannot possibly be doing anything else before I sleep or rest… ”
Honestly, the question hurt me unexpectedly.
This disease, Lupus, is so invisible. And when we say ” I am tired ” or ” I am exhausted ” to others… how can we justify or prove that our exhaustion is beyond what our body can handle, that it is more than his/her exhaustion. How do we know?
And do we even need to prove ourselves?
I am not sure really… I can only know what is true for me.
What is true for me is that, for many weeks in autumn and winter… I have had to take a nap at the back of my car almost every day after work before I can safely drive myself back home. And then when I do arrive home after 1-1.5 hour long commute, I sometimes still have to take another 15-20 minutes nap before I can even have dinner. I never had to do this before I was diagnosed with Lupus… even when I was exhausted, I could push myself without going to sleep then, but not now.
I don’t quite know why or how… I wish the explanation would be so clear and easy… but it’s not.
I have been mulling over this for weeks… and I am still stuck between compassion and pity…
Pity is condescending and belittling while compassion is uplifting and energizing.
Pity looks at you and it says in its face; “Oh, you look so tired… it’s alright, here let me just do this for you.” One does not even need to say a word, but when they pity you for what you are experiencing, you can feel it and see it in their faces and gestures. It makes me feel small and incapable.
Compassion looks at you and it says; “Hm, you look so tired today… do you want me to help you with that? Please let me know if you do…” then pats me on the back and stay around in my vicinity, observing and waiting for my response.
Both pity and compassion see the fact; that someone looks tired and needs help, but they reach out differently.
When compassion speaks to me, I feel grace… I feel empowered and I would say:
“I am so sorry that I cannot finish doing the housework today. My body is at its limit and I need to rest. I hope you can give me more time to do this tomorrow because I can do it… I just need my own pace to complete the task.”
when I know that my body cannot possibly complete the task at hand, I would surrender and accept the help… “Yeah, sorry… I can’t do this one anymore. Can you please do it for me?”
I have never truly learned the grace of asking for help until I got sick with Lupus.
Compassion requires trust.
This means that the other person truly understands and has empathy on your situation… It means s/he trusts that you are strong enough to deal with your challenges, even though it does not meet their standard.
Being trusted by someone is empowering, just as being able to complete a task that you have set yourself do… even if now, since Lupus, you have to do this task in 3 different batches and takes 1 week instead of 1 whole day to complete.
I just want to be me… let me be me, with Lupus, now. Some things I can do fast, some things I need to do in time. Some things I have to do in between naps. Some things I have to do every week or two.
And I realise that this battle between pity and compassion is as much as an internal struggle between myself and my ego as it is between me and other people around me…
The work always starts with you.
What was the hardest thing you struggle with socially and emotionally since your Lupus diagnosis?
Check out this awesome warrior’s blog on surviving chronic illness vs. relationship 😀