A thought-provoking excerpt from a book I was reading, which I find very applicable here:
“Metaphor is the currency of knowledge. I have spent my life learning incredible amounts of disparate, disconnected, obscure, useless pieces of knowledge, and they have turned out to be, almost all of them, extremely useful. Why. Because there is no such thing as disconnected facts. There is only complex structure. And both to explain complex structure to others and, perhaps more important – this is forgotten, usually – to understand them oneself, one needs better metaphors.” – Luca Turin
As such I will try to illustrate what living with a chronic illness is like, with Lupus as the main example, for those who wish to get a better idea.
1. Spoon Theory
We may as well start off with the most popular analogy out there. In fact, I first heard about this theory through a perfectly healthy friend.
It has even made its way into Wikipedia:
And there are new memes about it on Pinterest every day:
While the Lupus community itself might be divided towards this theory as they feel it does not paint a full picture, it has to be doing something right when a healthy person enquires about my spoons for the day.
2. Energy as Currency, and the Judicial System of the Body
This is an adaptation of the spoon theory, especially for the men in my life who keep asking, ‘but why spoons? Why not forks or something else?’, even though I have tried to explain that there is no difference.
It is like having ‘x’ amount of energy blocks to spend every day, and the only way to acquire a new batch is to queue up for them through a process called sleep.
A full night’s worth of proper rest would yield something like 10 blocks of fresh energy, while the average person would receive 100 blocks. It is your currency and you can spend them as you like, but every activity has a price, including the mundane ones such as brushing your teeth. There are no discounts just because you have less to spend.
The laws enforced by the system of a healthy body are also more liberal. Should you need a few extra blocks to spend for the day, you can usually put it on credit and borrow from tomorrow. We run on a cash based system instead, and get a variable daily allowance. If we steal from tomorrow’s supply, we are penalised and thrown into jail within our own bodies for a week or two.
3. Cars, Gears and Getting to Your Destination
Another picture we could paint would be that of car types and manual gears. If a shiny sports car or sturdy four wheel drive represents a healthy person’s body, then ours would be a vintage model (hey, seems like we have some personality too!).
We all wait before the same traffic light junction in the morning, and it turns green when the alarm clock rings. We all step on our pedals, but the amount of time taken to get up to speed with the day is much longer with a chronic illness.
Our vintage model struggles along with rusty parts and a leaky tank. You also have to be very thoughtful as to how you are going to utilise the remaining fuel supply, as there wasn’t much to begin with. Gears 4 and up are also a little cranky, so that leaves you with only gears 1 to 3 to play with mostly. Sometimes, the fuel runs out or the car breaks down before arriving at your destination, but mostly you just try to chug along and hope to get to where you need to go.
4. The Opposite of AIDs
Yes I get that it is not 100% comparable, but what I’d like to highlight here is the sole factor of immune deficiency versus hyperactivity as polar opposites.
As you might already know, AIDs is a syndrome that causes your immune system to become deficient, weak and defenseless. The immune system of a Lupus patient on the other hand is bubbling with too much activity – to the point where it starts attacking itself berserker style.
The medications taken to sedate this hyperactivity do not distinguish between good or bad cells, and forces the entire defense system to go into sleep mode. As with AIDs, this adds to the susceptibility of infections, although from different pathways.
For those who may be interested as I was, here are some articles of instances where both Lupus and HIV have been present in a single person:
Woman With Lupus Develops Powerful HIV Antibodies:
Rare Double Infection – Lupus Patient Makes Antibodies to Fight HIV:
Does Lupus Decrease the Risk of Other Diseases?:
5. The Parallels with Cancer
This is another comparison that will not be a complete match, but once again due to the greater awareness on cancer, I am going to use it. Also, many of the treatments and medications used to combat cancer overlaps with those for autoimmune disorders.
For example, I have experimented with a few Rituximab infusions, a drug which is also used to treat Leukemia. Lupus or Antiphospholipid Syndrome patients have also undergone treatments such as chemotherapy and bone marrow transplants, in an attempt to get their immune systems under control.
The side effects we experience for these treatments are the same, such as nausea, fatigue, pain and even death. Although, as with cancer, such malaise is triggered by the disease in itself as well.
In closing, are there any more examples you can think of or have heard about in relation to what living with a chronic illness is like? I, along with many others out there, would be interested to hear your take on it!