I know it’s a blessing to be able to work as a lupus patient. I know that the mere fact I can work, bring in money etc. means I’m not trapped in a cycle of minimal finances.
I also know that being able to work means I get to have a taste of the freedom that comes from normal life. You know, just doing ordinary things. And yes there is a price to pay for that, in terms of being horribly exhausted by the end of the day. Or you know being closer to sick people while taking medication like chemo. But at least it is a form of freedom.
What I’ve discovered over the years, is that when you can work and other people in your support group cannot, they do not consider how sick you may be. They resent you for being able to work. They perceive your illness to be less severe. They tell you that you aren’t a poster of what it’s like to live with lupus.
I’ve had people tell me that I don’t really know what it’s like to have lupus. I’ve had other people tell me that what I have cannot possibly be lupus because lupus is so debilitating. And that’s within a group of people who are supposed to be supportive.
What these people do not understand is that while I am blessed to be able to work, it comes at a very steep cost too. But of course, as they say, I’ve made that choice so therefore the price must not be too steep.
When I was first diagnosed, I heard horror stories about how shortly after being diagnosed, death was the next step. But before you died, you found yourself trapped in dreadful poverty. And I vowed to prove this all wrong. So I struggled through to a PhD. I struggled to work and be taken seriously in my field. I struggled to make sure my bills were paid and a safety net was there because insurance is fleeting.
And I thought, well surely other lupus patients would understand the fears and the need to keep going. I was wrong. But that’s okay. Not every lupus patient will work, some will at a very high cost. And I will be there for them. I will applaud their struggles and acknowledge the fine line we all walk.