When we’re too sick to work, but not sick enough for disability

There is a space that too many people with lupus are forced to live in, between being considered “disabled” and being expected to function as though nothing were wrong.

I know that space. Many of you also know it or are caring for a family member who lives in that ability gap.

We can work. We do work. We work more often than not, but that doesn’t mean we can work without limits or that our abilities are unaffected. That distinction matters significantly.

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June 19, 2018 by Marisa Zeppieri

Lupus and Employment: To Work or Not to Work?

Living in the gap

Living with lupus has taught me that the ability to work and the ability to sustain employment (or paying clients) are not always the same thing. We may be capable of working today, this week, or even for months at a time. But that doesn’t mean our bodies can tolerate an unrelenting schedule, continuous movement, or the assumption that every day’s productivity will look the same.

Lupus is the bully wolf that doesn’t ask permission before attacking.

There are days when we can accomplish everything expected of us and sometimes more. There are other days when simply getting through takes everything we have. There’s fatigue that sleep doesn’t fix, pain that deteriorates mobility, brain fog that makes simple tasks impossible, and flares that turn an ordinary routine into something overwhelming.

Yet, because we can still do some work, people may assume our abilities are normal and efficient.

That assumption is one of the greatest problems we need to challenge. There is an enormous gap between being completely unable to work and being able to maintain a conventional full-time job without consequences. Many people with chronic illnesses live within that gap. 

We are told, directly or indirectly, that if we aren’t sick enough to qualify for disability, then we should be able to do “some work” like everyone else. (“Some work” is a term used in disability denial letters.) Being able to function is not the same as being able to sustain employment, and one’s education level and age are not indicators of being able-bodied.

But what happens to the person who is capable of contributing but cannot safely sustain the pace that traditional employment expects?

Today, the answer is: Figure it out yourself. That isn’t acceptable.

People with lupus should not have to become completely incapacitated before our limitations are believed. Many times, we need accommodations to complete a fraction of the work we’d done prior to lupus.

We want to create, produce, assemble, teach, research, perform, and contribute. We want independence and purpose. We also want to be able to take care of the demands of chronic illness without being punished for it.

Perhaps that is the conversation we aren’t having enough. We talk about whether people with lupus can work when we should be asking a different question: What would it take for people with lupus to work sustainably?

A person shouldn’t have to become completely disabled before their needs are considered legitimate. There is so much dignity in work, having a career, and being productive. There is also dignity in rest, asking for help, adapting, and acknowledging that our bodies may have a different definition of “fully capable.”

Lupus has changed the way I understand capacity and ability. Being capable isn’t pushing through and pretending nothing hurts. Being able isn’t working through every flare. Neither means ignoring symptoms of a lupus attack because someone else has decided that work needs to be done.

Sometimes we have to listen to our bodies when they say, “This is all I can do. This is what I cannot do. This is what I need to keep going.” That shouldn’t make anyone living with lupus less valuable — just human.

For the people who are constantly caught between two impossible labels — “not disabled enough” and “not healthy enough” — your struggles and limitations are real, but so are your contributions and worth. 

Living with lupus shouldn’t mean having to choose between being an overly productive member of society and protecting your health.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.