the sick life of a full time patient

If you are not familiar with the idea of the Spoon Theory, developed by a blogger with a chronic disease, but want to know more about how people with chronic disease(s) feel on a daily basis, you can find the explanation here. You can also read on to see why I have problems with this explanation of living with chronic disease. However, tt is important to understand this concept as it was originally presented because I think it’s important to see how the author came up with the idea “on the spot” in a restaurant when she was basically “put on the spot.”

The Spoon Theory is just the tip of the iceberg for people living with chronic disease – especially for people with more than one chronic disease. Chronic disease is often autoimmune, and so it’s not uncommon for someone to have more than one chronic (autoimmune disease).

I identified with this idea of the Spoon Theory when I initially started being diagnosed with chronic illness, such as my fibromyalgia. Initially it seemed to fit. But then I started reading more about my health, understanding more about my health, and over the weeks and months I began to realize it doesn’t always apply. It cannot account for the unpredictability that is life when you have a (seemingly invisible) chronic disease. The Spoon Theory is too black and white. Life isn’t as easy is black and white. Nothing is that clear and concise, except maybe death, taxes, and medical bills. Life is gray, and chronic disease is even grayer than gray. The Spoon Theory even makes living life with chronic disease easier than it actually is.

The main problem with The Spoon Theory is that it does not take into account so many other things that are part of the life of being a full time sick person. I cannot go to the doctor, be given a medicine and expect to feel better in seven to ten days. More than one doctor has told me that he or she will help me, but has no idea how long it will take. First, right now, I am a full time patient. One of the primary reasons I cannot currently work is because I see so many doctors, too often. There’s not enough time to travel to and from appointments, keep my own medical records up to date and organized, pick up new medicines at the pharmacy and work a full time job on top of everything else every single adult person would like to be able to do with his or her life. (What’s a vacation?)

Second, it does not account for the shame and guilt a person with chronic disease, and chronic pain and/or fatigue feels when they have to ask for help from their friend, family member, or care giver – again. I’m lucky; I’m married and my husband is extremely understanding and reliable. He helps me out. I wish I could help him out as much as he helps me out. Also, it does not take into account the anxiety and stress involved in seeing a new doctor either in a new specialty for a new “problem” or having to find a new doctor because a doctor refused you care. Or, the fear of going to the emergency room because something is wrong but you don’t quite know what.

Third, it does not account for the mental fatigue and internal anguish caused by having your identity stripped away or otherwise altered against your will. Once I was a full time graduate student and intern at a local nonprofit organization. I was learning, and helping, hoping to be able to aid people further after I achieved my degree. Now? Sometimes I’m too tired to figure out what to make for lunch, let alone figure out what household chore needs completed next.

Fourth, The Spoon Theory suggests a normal versus abnormal mentality. Everyone has bad days. Everyone knows what it’s like to have a bad night of sleep. Everyone can take a nap and regain some lost energy. The Spoon Theory focuses on physical energy and physical fatigue. The Spoon Theory is useful in explaining how people with chronic disease have reduced energy and increased fatigue. But, beyond that the analogy loses some of its power because of the normal (them) versus abnomal (us) mentality – because it’s explaining how the sick people are different from the health people. Perhaps we should do more than focus on perceived outward differences.

Possibly the biggest problem with the Spoon Theory, is that it does not account for the invisible nature of many chronic diseases and the judgement that someone with reduced physical and or cognitive abilities deals with on a regular basis. I don’t look sick. However, I might act high, confused, or otherwise just “dumb” because of chronic pain, chronic fatigue, or side effects from medicines – including but not limited to pain medicine. I am sick.*

And one more thing, the Spoon Theory does not account for the fact that having one or more chronic diseases and living with chronic pain and or chronic fatigue changes how a person approaches life. It also changes how other people approach you, when you are the sick one.

I think I no longer identify as a spoonie,** at least not primarily. I’m not quite sure what I do identify as right now either. I feel like a full time patient, full time kitty mom (we do have 4 cats after all), a part time knitter, a part time writer, and a part time wife.

I live the sick life. At times the sick life is lonely and scary, full of unknowns and scary monsters. Other times, the sick life is just like, well, life.

 

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*I don’t think the word “sick” as it’s defined in the English language is specific enough to cover all aspects of sickness. We need more words.

**spoonie definitions vary depending on who you talk to or where you read.

Author: Histamine Queen

Nerd, wife, knitter, writer, cat mom, and comic book reader w/masters of science in Applied Sociology. I have histamine intolerance, lots of food allergies and sensitivities - including gluten. And I have multiple sclerosis fibromyalgia, asthma, drug allergies, and migraines. Basically, I have a collection of invisible chronic health problems. I don't just survive these things, but sometimes I do hate them because I see doctors so often that keeping healthy and staying full time employed is currently impossible.