How Chronic Illness Leads to Invisibility

Life in the Atopic Triangle

Factually I severe have eczema, a dozen severe allergies, and asthma. Individually any one of these wouldn't be so bad, but together they form the Atopic Triangle in which I’m trapped. It's the expression of a few gene bits flipped the wrong way; it's the medical root for the social and economic problems I've been dealing with my entire life.

My situation is difficult to discuss because I often get stuck on step one: what do I even call this? Every term comes with assumptions or categorizations I don't quite fit into. Am I disabled? Is there such a thing as partially disabled? How about chronically ill? I feel the conflicting pressures of minimizing myself because people have it worse and the need to remain a viable job seeker, while still communicating that I'm not ok and I need help. In social contexts I need to signal that I'm not a potential burden or financial liability, but there are also valid reasons why I'm not at the place in life where they think I should be.

My default solution is to avoid the conversation and simply deal with the consequences of being unseen. To the judge at the disability hearing, I'm not disabled, I'm a lazy parasite who chooses not to work. To the hundreds of employers who have rejected me, my chronic illness is a deal breaker that would require too many concessions (work from home, flexible hours). When it comes to my personal relationships, I do everything I can to make sure I'm not viewed as a burden because that that never goes well. So when it's so bad that I can't sleep and therefore can't function, I feel that I must be a hermit until I can earn my way back.

But even when I'm well, I must accept that I have to live like an alien visitor. With my food allergies, I can't eat at (much less work in) restaurants or eat from other people's kitchens. Eating an errant chickpea has already cost me so much. Because of my pet allergies, I can't visit most people's homes or ride in their vehicles. Nothing ruins the mood more than my throat slowly closing up and having to ask for a ride to the emergency room so I can save money avoiding the ambulance.

When I'm sick and my eczema is all over, I don't wish to get my skin flakes everywhere or to openly scratch, a bodily function regarded as crack-headed when one can't stop. I don't want to hear about how your cousin's eczema went away when they started eating paleo or how you heard about this new silver bullet medication. It's not even that I dislike advice, but in my case being as itchy as I am that the continued discussion of my eczema makes me even more itchy. Even writing this has been difficult and delayed by multiple scratching breaks.

So what do I do?

I've been told the reason I am where I am is because of a negative attitude. I suppose that's possible. So in the spirit of listening to the most common piece of advice I've received from everyone from family to random strangers, I will "stop whining and be positive". My next few entires will detail all the things I will be doing if when I get out survival mode.