Jar of Marbles – A Tale of Fatigue

One of the most frustrating experiences of living with fatigue is the inability to help others truly understand what one lives with on a daily basis. Following is an analogy that I have found useful for describing how fatigue affects one’s life.

First of all, what is fatigue?

Fatigue can by physical or mental. It is a overwhelming weariness, an extreme tiredness combined with feeling weak that reduces one’s ability to concentrate, be fully present and participate as a productive member of society. Fatigue is often confused with being sleepy or tired, but it is far more than that; it is a chronic condition that isn’t helped by proper, restful sleep. People with fatigue often feel weighed down, as if every step they take uses every ounce of energy that they have. Physical fatigue causes muscle weakness, and steals a person’s strength; it makes doing daily activities exacting and exhausting. Mental fatigue steals a person’s ability to fully function, making it difficult to just get out of bed in the morning, let alone accomplish one’s daily tasks. Fatigue makes it severely challenging to concentrate, become motivated, and/or find the energy or ability to go about one’s day.

Now that we have a basic idea of fatigue, picture a jar of marbles.

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Every person has a certain level of energy per day, and the marbles in the jar represent that amount of energy. Each person’s level of energy is different, leading some people to have larger or smaller jars than others. The marbles of energy are used throughout the day for our daily tasks, including, but not limited to: personal hygiene, meal preparation, eating, maintaining one’s home, relationships, parenting, caring for a pet, work, volunteering, communication, errands, transportation, appointments, hobbies, mobility, sports, and/or exercise. Many people find that by the end of a day they have little to no marbles left in their jar. Fatigue affects a person’s daily life by starting them out with smaller jars, and then stealing their marbles of energy at a much faster rate, using up one’s supplies long before their day is finished. For some people with fatigue, getting out of bed in the morning, brushing one’s teeth, and/or making breakfast can use up their entire supply of marbles for that one day. In other cases, people with fatigue are only able to accomplish necessary daily tasks by stealing marbles from the next day’s jar, which causes them to have little to no marbles of energy the following day.

Life with fatigue is draining. People with fatigue can go for days without any marbles of energy in their jars. They are weighed down by fatigue, and while they want to accomplish daily tasks, their energy, concentration, motivation and ability are stolen by the lack of marbles. As fatigue is something that is felt, and not seen, it can often be hard for people without fatigue to understand how it affects one’s life. I hope this analogy helps to shed some light on how fatigue affects one’s ability to go about their daily lives.

Chronic Fatigue and The Golden Girls

 

In 1989, The Golden Girls kicked off their fifth season with a two-part episode about Dorothy (Bea Arthur) trying to get a medical professional to take her mysterious fatigue and physical symptoms seriously. The story was based on the real life struggles of Golden Girls’ staff writer Susan Harris. The episodes, titled “Sick and Tired”, are sadly reflective of what people with chronic pain and fatigue still experience today. Twenty-six years later, the lines are still being repeated by patients trying to be taken seriously by doctors who dismiss them. All this time later and yet people who know their bodies intimately, and know when something is wrong, continue to be told by doctors that they are just tired, that they need a change in their life, that nothing is wrong with them (despite evidence to the contrary) and that if something is wrong it must be mental.

As a person who lives with chronic pain and episodic fatigue I watched in amazement as interactions I’ve had with doctors were played out on a show from twenty-six years ago. I watched as lines I’d been fed by impatient doctors were spoken to Dorothy’s character: “you are not sick”, “it is mental”, “there’s nothing wrong with you”, “have you seen a psychiatrist?”. Why, I thought, has the medical profession not come further in their treatment of people with chronic pain? Our symptoms might not fit neatly into a doctor’s checklist, but our pain, fatigue and experiences are real and deserve to be investigated. Why do patients still have to fight so hard to be heard, to have their knowledge of their bodies respected, and to not be treated like people who are wasting doctors’ time?

How many times have people with chronic pain or fatigue said to themselves, as Dorothy says in the episode “maybe I am crazy, nobody believes me, maybe I am crazy”. Fortunately Dorothy has friends who tell her “Just because a doctor hasn’t found something doesn’t mean it isn’t there.” When Dorothy finally finds a doctor who believes her she says, as so many of us have said “I can’t tell you what it means to have someone like you believe in me.” Up

on seeing a new specialist who confirms Chronic Fatigue Syndrome, Dorothy asks why the other doctors didn’t say

the same, his response is that “the ones who have heard about it

sometimes have trouble believing it exists because they can’t see it under their microscopes just yet. Those colleagues of mine tend to blame the victim.” Oh, how I wish I hadn’t completely understood that line. I have, too many times to count, been blamed by medical professionals as the problem, as has the majority of people with chronic fatigue or pain. This goes back to a previous column, in which I state that the medical profession must make room for doctors to be vulnerable, to not know all the answers, to say to a patient that they just don’t know what is happening or what to do; instead, frustrated by their inability to diagnosis something, they blame the patient.

In the episode Dorothy celebrates with a dinner out with her friends and states “I can’t tell you how relieved I am to be sick, and not sick and crazy. And to know that thousands of others have it too.” What a relief it is to have a name, to know one isn’t crazy, to know others understand and live your experience, to know that fighting for yourself and your health was worth it. This line still resonates today with anyone who has chronic pain or fatigue.

Dorothy, unlike so many of us, has an opportunity to confront one of the specialists that so rudely dismissed her and her symptoms. She gets to say what so many of us wish we had the chance to say “I came to you sick and scared and you dismissed me. You didn’t have the answer and instead of saying I don’t know, you dismissed me. You made me feel like a fool, a neurotic, a waste of your time. No one deserves that kind of treatment. They need to be heard. They need caring. They need compassion.”

I hope that in twenty-six years, someone with chronic pain or fatigue, watching these two episodes, won’t feel the same sense of recognition as I did. I hope that patients continue to speak out in forums, on blogs, in conferences, wherever we can, to ensure that the medical professionals understand that dismissing us, ignoring our symptoms, and making us feel crazy needs to stop! The medical professionals don’t need to have all the answers, although that would be nice, but they do need to have a basic level of respect for patients, their experiences, and their pain and/or fatigue. We need to work together to find answers. And hopefully one day the two part episode “Sick and Tired” will be a relic of long forgotten days.

“Sick and Tired”, The Golden Girls Episode 1: https://www.youtube.com/watch?v=3zJKah1rPis
“Sick and Tired”, The Golden Girls Episode 2: https://www.youtube.com/watch?v=g1NxZakbm-M

Medical Model of Disability versus Social Model of Disability

For too long people with disabilities have been treated as second-class citizens. They have repeatedly been bombarded by messages that they their bodies are defective, that they need to be fixed or cured, and that their inability to participate fully in society is because of them and their disability. Carol Gill at the Chicago Institute of Disability Research wrote a paper that strove to see how people with disabilities are seen by society, as well as how people with disabilities see themselves. Gill believes that there has been an overemphasis on the medical model of disability, which has kept people with disabilities from being able to fully participate in society. Following is a description of the five key differences between the two models.

1. The medical model says that disability is a deficiency or abnormality whereas the social model says that disability is a difference, just as a person’s gender, age or race is a difference.

2. The medical model says that having a disability is negative whereas the social model says that having a disability is neutral. It is a part of who you are.

3. The medical model says that the disability is in you and it is your problem, whereas the social model says that disability exists in the interaction between the individual and society. Disability issues stem from someone with a disability trying to function in an inaccessible society.

4. The medical model tries to remedy disability through a medical cure or by trying to make the person appear less disabled or more “normal”, whereas the social model says that the remedy is a change in the interaction between the individual and society. When society changes the issues of a person with a disability disappear. If a building is fully accessible it doesn’t matter if a person walks in, runs in or comes in with a wheelchair or walker.

5. And finally, the medical model says that the fix is found with a professional. The only person who can help a person with a disability fit into society, and be accepted, is a professional. The social model, however, says that the fix can be found within the individual with a disability or anyone who wants people with disabilities to be equally included in society, including you, the person reading this blog right now.

For too long people with disabilities have been told that there is something wrong with them, that they need to be fixed and that they shouldn’t be surprised that they are not fully welcomed or able to participate in society. These negative messages are often internalized by people with disabilities, which creates even more barriers to participation. However, more people with disabilities are finding their voices, and asserting their rights, all the while challenging the perceptions, definitions, and models of disability that currently exist. They are stating that we must move away from the medical model, which states that the person with the disability is the problem, towards the social model, which emphasizes that society itself has a responsibility to create inclusive communities. As the differences in the models are being shared and explained, people with disabilities are gaining support and understanding from others in society, be they politicians, city employees, advocates, non-profit organizations, medical professionals, and/or individuals within the community. People are joining together to state that disability, like gender, age, and/or race should not be a barrier to participation. Gill’s paper on the two differing models has helped to move that dialogue forward.

You, too, can be part of the move away from the medical model and towards the social model. You can help to work towards an inclusive society whereby the disability no longer ostracizes, and where one no longer sees a person with a disability as less than their fellow community members.