Facing Inequality in My Workplace Due to Invisible Illness

The general attitude failed me.

I am and always have been a tough, stubborn, independent person who pushes myself to the limit. I never even allowed myself time to rest during a cold, of course to my own detriment.

I knew I was really unwell, but the doctors couldn’t find anything so a part of me took into my subconscious that I must be a bit of a hypochondriac. The world around me was fast-paced and phrases like “no excuses” echoed around constantly in my head. Instead I fought hard to keep up and kept any suffering to myself.

Years passed, jobs came and went, opportunities missed. Random sick days mounted as I battled to keep up with everyone else. And finally, a diagnosis – though did I feel better? Not really, because there was limited support, limited understanding and limited compassion. The official label was less like a golden lifeline to proper treatment and support and more like a dreadful burden that was actually better off hidden.

I didn’t want to be seen as different, I didn’t want to be perceived as weak and I certainly didn’t want my friends to cease asking me to come out, so I pushed myself no matter how bad I felt, despite paying for it later.

I became extremely positive-minded, ate incredibly well, only drank water throughout the day and rarely spoke about illness. In many ways it helped, especially psychologically, as physical health is interconnected with this. Poor mental health can drastically affect physical health and vice versa. But my illness never completely dissipated, and I just couldn’t accept that. Rather than work around my limitations at the time and accept myself for who I was, I scolded myself for not keeping up.

Honesty is honestly not always the best policy.

I had always excelled in past jobs, but I found myself incredibly drained from the high expectations of my employers. Pacing myself was not an option, because as far as they knew I was healthy and these were expectations anyone would struggle to fulfill. After speaking to a colleague, I decided to follow her advice and declare what I had. Unfortunately, my experience was far from a positive one.

If you are immunocompromised, you will usually be the first to catch a virus, last to get well and also first to go down with stress. We are good highlighters of environments and structures that need to be improved, which is very positive if your superiors recognize this. If that is not the case, as sadly it often isn’t, then we can be seen as unreliable, lazy and incompetent in the worst case scenarios.

I look quite a bit younger than I am, I look after myself very well and my complexion is usually very good. It’s not always easy to express you are struggling and be believed if the outside doesn’t reflect that. It also doesn’t help if you love to study, socialize and go traveling in your free time.

Sadly, we have this general outdated opinion that people with any kind of medical issue should be confined to their bed at all times and should not be allowed to have fun, which exists alongside expressions of outward sympathy. And yet, people have had their benefits stopped because they looked like they were having too much fun on their social profile.

It desperately needs to be understood that conditions can, at times, be unpredictable and fluctuating. In order to keep healthy physically, we need a good work-life balance.

I am fortunate to be very self-aware, and I could foresee a stressful situation at work coming to its conclusion in relation to my ability to cope health-wise. It wasn’t an uncertain chicken or egg scenario in this case. I was under stress in a difficult situation and I knew I was going under, so I did what any sensible person would do and asked for support. I was met with anything but support and allowed to go under. Not only did I go under with stress, but the effect on my health still affects me to this day. In the end, I asked for “reasonable” adjustments and they were repeatedly refused, alongside other gaslighting tactics. This clearly showed me I had been deemed as ‘making excuses,’ and the effects of this were devastating.

I manage myself well. I always have. I know my limitations about what I can do. I don’t think, “Yeah let’s take the easy road,” then say I am struggling and wait for someone to carry me. The road can be immensely tough at times, and being honest and open can bring so much judgment and criticism. We have often reached our breaking point by the time we speak up. That is not reflective of an understanding and tolerant society.

Why someone would think I’m lying about being sick is beyond me. What young person wants to be ill and to be carried when they clearly want every opportunity to enjoy life?

Sickness is deemed as weakness in society.

Human beings get sick, sometimes more permanently than others, though conditions do fluctuate and triggers can be identified and avoided. Many of these people are luckily able to work, as reflected in the latest official statistics from the Department of Work and Pensions. In 2012, 46.3% of working-age disabled people in Great Britain were in employment; however, there is still a big gap between the percentage of disabled people in employment and the 76.4% of working-age non-disabled people in employment. It would be merely speculative to suggest why this is the case, as conditions can affect people in varying degrees and some people are far too unwell to work, but findings also showed that disabled people are more likely to treated unfairly at work.

The seemingly overarching preconception that all disabled people use wheelchairs does not help those of us who have conditions that are invisible to the naked eye. It can be immensely challenging to get support when required if you look like the epitome of good health.

We also seem to have this unwritten rule in society that if we have a cold, we should solider on and go into work regardless. It doesn’t matter that we are potentially infecting an entire workforce, some of whom may have autoimmune conditions or a family member with one. A cold can kill people with certain conditions, yet there are still workplaces that offer employees incentives to not go off sick. Common sense often evades us in the workplace; we fail to see that when we become ill, our body tries to force us to rest. If we ignore that for long enough, we can create future problems for ourselves. Everybody’s reaction to a specific strain of virus is different, yet we still pull out the “man up” card when one person goes home and someone else stays at work.

Reflection:

I don’t want an easier ride than others at work. I don’t want to be carried.
What I do expect is equality and, whether I like it or not, my capacity for extreme stress is somewhat lower than average and there are more efficient ways for me to process information. I don’t expect to go home in despair over being made to feel like I am making excuses, like I am a hypochondriac or like I’m any less valuable than my colleagues. Give me the individual tools I need to support myself, if and when required.

Invisible conditions are far more common in the workplace than people seem to realize, though sadly many people will not speak out based on the victimization they have seen others endure.

We need to change the way we treat employees in general, not just in relation to health. We all process information differently and we all have different strengths. If we start to see people going under, then as employers we have to ask why in order to build a positive and continually successful environment.

Personally, I won’t give up because someone blames me. I won’t stop working and I refuse to be the scapegoat for outdated systems and ways in which staff are treated. We need to work together if we want the best working environment. A blame culture is oppressive and not appropriate in today’s growing and diverse society. We spend a very large percentage of our time at work; we don’t want to fail and we don’t want you to fail either – it does nothing for anyone’s self esteem to feel undervalued.

Recognize individuality and start exercising those Equal Opportunity policies that you as employers often preach to us to follow.

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