How to remain positive when living with chronic illness or disability impacts on your work life.

“You may not control all the events that happen to you, but you can decide not to be reduced by them.” Maya Angelou

Reasonable adjustments. Reasonable accommodation. I have always been intrigued by these ideas. Most developed economies require employers to provide reasonable adjustments that are necessary and possible to do, to enable a person with a disability to work effectively and enjoy equal opportunity as others. This includes administrative, environmental, or procedural alterations e.g. ensuring physical access for wheelchairs, allowing necessary breaks, job restructuring; part-time or modified work schedules; and acquiring or modifying equipment; among others. This however does not constitute an unjustifiable hardship for the employer.

So essentially, employers are required to do what is possible. Therein lies the inadvertent and inevitable gap - the ground is never really levelled for people with disability, especially in countries where the labour laws are not mature enough to guide employers or enforce compliance. This gets even more complicated for people with chronic illnesses (e.g. diabetes, sickle anaemia, lupus, name it…) because we generally don’t view them as disabled especially as such illnesses are not static. Some days you can work, while others you cannot, and there is no way to predict when you will be healthy or sick. Yet oftentimes, these conditions can prevent one from working, performing normal daily tasks and socializing. Less developed economies rarely have the resources nor the framework for adjustments to accommodate chronically ill workers. In fact, kindness and moral obligation buttress any adjustments made (if at all). When all you are looking for is to be given a chance just like others, despite your limitations or restrictions, you really don’t have much choice when acquiring and keeping a job is a challenge.

In general, people who are chronically ill can find employment, thanks to increasing awareness and increasing maturity of work policies. Many employers now have more equitable and inclusive policies. I interviewed a group of research participants in the UK some years back in a study I did on experiences of workers with sickle cell disease. These interviews reminded me how life really is not fair. By accident of birth, your gender, social status, intelligence or emotional resilience; you can either excel or really struggle in life.

One of the participants was in a job that provided her with a fuelled car, a work-from-home arrangement when she was not feeling well and a robust healthcare plan. On the other end of the spectrum, one of the guys had dropped out of high school so he could only get menial jobs, which consistently came with no perks. He essentially was doomed to fail from the word go - as a sickler, strenuous work is a trigger for painful episodes (sickle cell crises). He was also barely tolerated by his family. Another guy who was highly educated was forced to drop out of the corporate world and open a private consultancy. His absences were not necessarily welcome to his employers. His consultancy did reasonably well - on the good days. But on the bad ones, he had no choice but to close and stay home until he was well enough. The more frequent his episodes were, the less income he had … and the more he struggled to make ends meet.

These three stories represent the spectrum of experiences in a country that has strong work policies. Many African countries do not, so many chronically ill people struggle to find or keep jobs. We really do live in a broken, unequal system driven by profit, economic advantage, self-propulsion and personal comfort more than care and attention to the less privileged. We worry about our personal achievements even when we earn and achieve more than others whose only failure was being born with or developing an ailment; or suffering an accident. We are so conditioned by our privilege and circumstance that exclusivity is only a problem when we do not receive its spoils. Our socialisation has not prepared us to understand our advantage in the world or the authenticity of others pain.

In such a context, reasonable adjustments or compassion are ‘sacrificial’ decisions we make for those who happen to be in our communities or organisations. People can be kind and accommodating – but even that sometimes can only go so far. Just like organisations, people do what they can; and many times, only as far as they are not inconvenienced. It is less inconvenient if we view the vulnerable as a social concept and more comfortable to ponder their pain from a distance. Organisations pore over metrics of ‘high cost’ cases on our medical plans and do cold analyses of the ‘frequent users’. Sick days off or multiple breaks don’t attract a yellow star for those frequently unwell neither does one consistently receive ready support when they call in sick or call in late for work after a difficult night.

So, what do you do when you feel like the odds are against you as a worker living with a chronic condition? Work is challenging – even for the healthiest of us and regardless of your medical condition, you will face the same difficulties as your healthy colleagues: tight deadlines, tighter budgets, difficult staff, angry customers, difficult bosses. Even when your job offers some reasonable adjustments – the world doesn’t ‘adjust’ for stress, pressure, demands, financial struggles or family responsibilities. The realities of life and work offer no ‘reasonable adjustment’ for your condition.

But we can’t perpetually bemoan how unfair this world is because we live in a broken, unequal system. Life is such that even the healthiest people have one thing or the other that they feel is unfair; so, we must find ways to not only cope, but thrive in life regardless of what end of the stick we get.

In the solitary moments when I endured excruciating pain as a child, I used to think that I would die. Just like the doctors and society predicted, I knew that I would surely die young. Until I realised at 18 that this verdict had not come true. I had waited to die for as long as my child’s mind could understand, and it was only in my late teens that the penny dropped, and I thought “I have not died yet. Would it not be much better for me to expect to live?” In my expectation to die, I had half-heartedly lived, letting life happen to me rather than embracing it. So, choose life. Regardless of what the doctors or people say, choose life – in your spirit, thoughts and actions - intentionally choose to live. I look back and it is a bitter, sweet appreciation for my life because there are so many perfectly healthy people who have passed on over the years. Life is unpredictable so do not sign your own death sentence. We don’t know when we will die just as we can’t tell how long we will live.

The day I chose to live was the beginning of my true self-discovery. It is then that I embraced the possibilities of life, career or even growing old. My mind opened to the gifts I had as a human being, leading to a successful undergraduate and postgraduate university experience and a fulfilling career. My growth and ascent in the corporate world are rooted in my pursuit of a fulfilled life grounded in my strengths and values. So, nurture your strengths and pursue personal development as a priority. These are foundations that will catapult you ahead in your personal and work relationships.

My self-discovery triggered a journey of self-awareness that has helped me navigate life and work. So, know and accept thyself. We all have strengths and weakness, so get to know what you are good at and what you really suck at. And accept yourself - warts and all. One of my supervisors used to tell me: “the problem is that you want people to like you”. What he didn’t see, and I didn’t know then is that my condition had predisposed me to be empathetic to others. I had learned to listen, instead of talk. See, I knew the value of receiving empathy and finding a listening ear. I was only giving what I myself had received and had learned to value. I knew the worth of kindness given even when it wasn’t guaranteed. My condition had inadvertently honed critical life skills and planted the seed of my belief in the potential of people. This is one of the reasons why I make a darn good manager and HR practitioner.

In knowing yourself, understand and manage your condition. Keep your medical appointments and adhere to the treatment. Read about your condition but don’t obsess over it, otherwise you risk becoming the pseudo-doctor patient who is every medical practitioner’s nightmare. Know and manage your triggers. Seek advice on eating right. Drink enough water. Keep as fit as you can and, as far as your condition allows, exercise regularly. These are basic truths and they work. While at it, think total wellness. In addition to the medical tests and treatments required, the physical fitness and all; remember that wellness includes mind, body and spirit. Manage your emotions, minimise stress; and pursue and maintain healthy relationships. If you’re spiritual, nurture that side too – meditate or pray continuously. Laugh often and, yes, do cry sometimes. Just make sure that the crying you do is a cathartic process rather than a pity party. When you are tempted to throw yourself a pity party, don’t stay too long… remember to reset and restart.

In doing all this, however, know that you will sometimes be disappointed. Your body may from time to time fail you, even when you know you have done what you can to stay healthy. A flare, an episode, a crisis. These happen but when they do – reset and restart: choose life. And, by the way, people will also let you down. Some years ago, I fell seriously ill and ended up in the Intensive Care Unit. Many doctors and people did not expect me to survive. But I did. When I returned to work, I thought about how family, friends and colleagues were there for me. Praying, encouraging, asking others to pray. Others visited at home, sent or brought flowers and cards. They were there for me. But some people never checked in, never sent an encouraging note, and never even bothered to say “It’s good to have you back” when I returned to work. After some weeks at work, my supervisor then sat me down and said that I was not as energetic as I was before and so he proposed that I change jobs to a different function. I think why I felt let down was that rather than asking how I felt and whether I needed more time to regain my strength, an ‘option’ had already been chosen for me. They felt that I needed to be moved from the job I had successfully done for years. So, sometimes people you look up to and trust will disappoint you. I look back and I bet my supervisor knew he was doing the right thing. His heart was in the right place, regardless of how I felt in the moment. So, when such disappointments arise… reset, restart.

It is said that it is more blessed to give than to receive. Some people are natural givers and others grow into it. Learn to give generously – of your time, attention and resources. What you seek or expect, you should also readily give. If you seek compassion, give it. If you yearn for support, support others at every opportunity. Your motivation for giving should be with pure intentions, so give without expectation. Expecting others to be good to you, just because you are good to them sets you up for disappointment. And remember, some people will abuse your generosity and take you for granted. Learn from it, move on and don’t habour resentments - humans are fallible. Don’t be shattered when people disappoint you. Such is life, so let your choices be driven by your values, not how others treat you.

This is in no way exhaustive, but I hope it speaks to someone and rekindles your fire. Choose life. Defy the limitations of your condition and in the private spaces of your struggle, imagine better things. Take your mental brush and ardently paint your life in colour - replace pain with hope, grey days with rainbows, despair with hope, isolation with dreams. Let the tapestry of your imagination repaint your fate. The world’s promise for reasonable adjustment may let you down, but you can intentionally create a mental transformation. Do not wait for the world - reach inside and make a reasonable adjustment yourself.

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Parts of this article were inspired by a speech by Jonathan Roberts, one of the 2017 class day speakers, Harvard University and from https://www.disabled-world.com/disability/social-security/chronic-illness.php