It has taken me a while to write this. I haven’t fully had the words to explain and my thoughts have been quite muddled. A few things have been happening – different pieces being put in place. I think God used these things to make me face a few uncomfortable truths in my life. What have these been?
The first on the list, but not the first chronologically, has been recent conversations with a new friend from Namibia, who is blind. I’ve been listening to how he deals with his disability, and seeks to make the workplace more inclusive. I was also blessed with an experience of doing a talk for a blind cohort, consisting of participants largely from the African continent. The questions that some of the participants put to me really moved me. They wanted to know what it would take to make the world see them as people of value with something to offer.
There are a few more things to add to that list. I was part of a panel for a webinar for the Society of Industrial and Organizational Psychology (SIOP), which was organized by their Disability, Inclusion, and Accessibility Committee (DIAC). The webinar was about navigating burnout, boreout, and disability. The panelists and audience were predominantly American, and their discussions and questions really hit home for me.
Add to that concoction – work that I took on as maternity cover with a local college. It has been an interesting experience. The college is so close to the Twin Towers in KL, which is a sight that always gives me pleasure. That part of the city brings me such a lot of memories from different periods of my life. Yet, the truth is I have found the experience difficult.
Then, I met with a dear friend. We used to work together – and collegiality turned to friendship, which is something I value so much. She’s amazing. We were catching up after a bit of a busy year, during which we hardly got to meet up. That conversation was another piece in getting me to start writing this blog.
So, what are these uncomfortable truths?
I have openly acknowledged that I have rheumatoid arthritis (RA). RA is an autoimmune disease. I am of the school of thought that it should be ‘rheumatoid disease’ to avoid the idea that it is ‘just arthritis.’
Arthritis is a common name for swollen or stiff joints. The most common form of arthritis is osteoarthritis, which happens as a result of ‘wear and tear’ or overuse of a joint. It commonly happens as people get older because of loss of muscle mass and sometimes inflammation in the body. Often people think that RA happens when you get older – not true. It is different.
Rheumatoid arthritis is a condition where there the body’s immune system attacks not just the joints, but can also attack the organs, including the heart, eyes, and blood vessels. This list isn’t exhaustive. I sometimes joke that it’s a generous disease – the disease that keeps giving!
In many countries, RA is classified as a disability. Usually, when the disease interferes with your ability to do everyday things for about 12 months, you fall under this category. There are steps you have to take to get the ‘disability’ status, and this differs from country to country.
The hard truths I’ve had to face in light of all these moving pieces coming together, is this realization. The disease is interfering with my ability to work normally. I have struggled with the maternity cover work. I run my own business, and the income is definitely welcome, but what used to be a walk in the park for me, was like navigating a maze. I was exhausted by the daily commute. I struggled to cope with my other work, which included making edits on my book. I started getting low grade fevers every night, a sure sign of an imminent flare. I’m dying to be in bed by 5pm. I’ve had to cancel many social meet ups, and haven’t gone to church in a while because I’m too tired. I have felt cranky and reactive. I have had to suppress my feelings quite a lot!
Despite all this, it took me a while to really understand – maybe acknowledge, what was going on. Life has changed. My disease isn’t noticeable to anyone. It falls under the category of an invisible disability. An invisible disability includes things like depression, anxiety, ADHD, and a whole host of struggles that aren’t necessarily visible to others.
I have struggled with this invisible disease. It takes so much more effort trying to explain it, and when I do, I feel like a broken record.
What stopped me from applying for disability status, back in 2019, was worry that my earning capacity would be impacted. There is evidence that a person with a disability status has their earning ability impaired. A 2024 UNICEF article called Living on the Edge, revealed that households headed by a person with a disability had the lowest income on average. It was what a doctor told me I’d face if I went ahead and applied for disability. Disability also lowers our chances for employment. The results of the study have validated my decision to not apply for disability status.
The fact that I can decide not to apply for the disability status, is in itself a privilege. Not everyone can do this. In my conversation with my friend, I kept saying how my threshold for pain is high. It is ridiculously high. My rheumatologist is at a loss at how I don’t take painkillers every day. This isn’t healthy because it means I end up pushing myself till my body gives way.
This is what has happened.
I have been fortunate that the people I am temporarily working with in the college have been very kind. This has been helpful. I can’t begin to imagine how it is if you’re having to deal with unkindness over and above a disability. Yet, there have been lessons learnt.
I have been pushing myself. In my mind, I am telling myself not to be lazy. I’m challenging myself to live up to former standards. But how do I live up to old benchmarks when my body is no longer the same and my mind is under a lot more pressure to help me manage my illness?
A common explanation we use when trying to explain to non-sufferers, how RA or a disability impacts us, is the spoon theory, where each individual has a spoon for every unit of physical and mental energy that is exercised. The lady who came up with this, Christine Miserandino, explains that someone with a chronic illness has a limited number of spoons per day.
My old self – prior to my illness, had an inexhaustible number of spoons. I’m an extrovert – I absorb energy from social settings. So, in the past, I may have had about a hundred spoons a day. I had boundless energy. Commuting up and down from home to the city a few times a day was nothing at all. In fact, I would willingly offer rides to friends who lived far out. It was no skin off my nose. I could be very busy at work, still pack my social calendar, and do all sorts of volunteer stuff at church or within my community.
At present, I have about 15 spoons on a good day. About 8 of these I reserve for doing my work – I love working. Another 2 go towards very minimal self-care – basic things such as brushing my teeth, showering, getting dressed, and going for walks. Whilst my threshold for pain is high, I feel pain, and these little but necessary tasks hurt. I give 2 more spoons to friends and family. There is a distinct challenge to my ability to remain connected. I need to because it is such an important aspect for my mental health. I have 3 spoons left, which I give towards Gamora, my pooch, and looking after my home.
As I dissect this, I realize, I have no more spoons for commuting the way I used to. I have no more spoons for my social calendar – not in the same way. I have no more spoons for additional extras at work or for unnecessary dramas in my personal life. I am completely tapped out. Every time I push past this, I am hurting both my physical and mental wellbeing.
I have known this for a while now, but it has been hard to accept. The penny has finally dropped.
What does this now mean for me – and for others like me?
First up, I think we need to have more conversations about making inclusivity in the workplace a reality, not just a buzzword. I want to work with leaders and organizations to build awareness and put in practical plans.
Second, I think entrepreneurs like me, and other professionals, need to start reframing what success really means. We get so sucked into the metrics of how such and such a person grew their business into a million or multi-million dollar one. We seem to measure success only by dollars and cents. The reality is, for anyone struggling with a disability (seen/invisible), dollars and cents cannot buy you more spoons. The success metric needs to be revamped.
Third, I think this calls for a lot of self-inspection and reflection. Maybe we need to rethink our purpose in life. Does our ‘why’ need to be updated a little? Do we really have the same purpose as we did before? Can we take the same route to achieve our previous goals, or should we factor in some different steps? I think if we examine ourselves, we can find that our purpose in life changes with our circumstances. This isn’t necessarily a bad thing. Remember, authenticity is when we show up as we are – all of us, disability, chronic illness and all. It is when our purpose resonates with our capabilities and opportunities that we are truly our authentic selves. This can be hard. We have idolized ambition to a point that skewers our reality.
Fourth, enjoy the process. My blind friend agreed to doing a podcast with me. I loved what he said about how the moments he faces challenges are the moments he gets excited because he knows it is when he will grow. It is indeed true. Our lows often provide us the chance to respond with grace. We need to have that grace. I don’t mean we need to be excited about our disabilities or chronic illnesses. They are not fun! Yet, we are on a path and that path requires us to show up as we are. Embrace that. We find joy when we find gratitude in the journey. We also find true friends along the way.
This shouldn’t have taken me so long to write. I have written about my pain and low periods before, but I have never acknowledged the need for me to change my own approach. I want to do this and I want to walk alongside those who need help to do this. I’ll be looking at revamping the use of my spoons. I’m going to save quite a few for my voice.
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