By Brian Grady, Ph.D.
What makes an illness or condition visible or invisible?
Assistive devices, body appearance, and behaviour tell others you are ill or disabled. Devices include canes, wheelchairs, walkers, crutches, braces. Most of these are used for mobility. Body appearance can be things like skin colour, deformities, and scarring. Behaviour includes limping or other changes in gait, posture, sounds (like groaning), or facial expressions of pain or tension.
Invisible is common
Chronic pain and many other chronic conditions are rarely visible to others. 3.4 million Canadians and 26 million Americans (therefore, on the order of one in ten people) are considered to be disabled to some significant degree, but most of these people (about 3/4) will not need assistive devices or give other signals that send the message "I'm sick". Body appearances are often hidden, and illness behaviour may be suppressed or misunderstood. Many people with a physical problem look fine to others.
Examples of invisible conditions are arthritis, asthma, brain injury, chronic fatigue syndrome, chronic pain of most types, Cushing's syndrome, cystic fibrosis, diabetes, endometriosis, heart disease, lupus, Lyme disease, Meniere's disease, migraine, multiple sclerosis in the early stages, neurological and seizure disorders, osteoporosis, organ transplant, and Parkinson’s disease.
Impact of condition
Not only the condition, but also the associated problems may be invisible to others. Side effects of medications taken for these conditions are not usually known to others. Strangers will not realize that an activity might have a big impact on symptoms -- not seen until later. For example, there might be a crash later after over-doing an activity. The effects of the condition on family life, sleep, and the mental state of the patient are usually a private matter. The immediate symptoms are just the start. Others can easily underestimate what you are really coping with.
Illness roles
People's understanding of illness is based mostly on acute conditions. We understand a cold or a broken leg. People are either sick or healthy. The sick and healthy roles are well understood. Sick people complain, look ill, and remain inactive while they recover, which is usually within a few days or weeks. This is true for acute illnesses or pain. We also have an idea of what an invalid is. This is a person who needs to lie in bed being cared for long term. But what about the role of someone with a chronic condition that is not totally disabling? Someone who can go for walks, for example, and do some errands, but has limited capacity. This role is not so well defined in our culture.
Interestingly, there are some traditional cultures, where the person with a chronic condition (especially if they are mid life or older and female) is not expected to do anything or really function. They are put into the 'invalid' category and have trouble being allowed to do things that would be more functional.
People's expectations
Based on the well-sick-invalid framework, you are allowed to be sick or limited for a while. After some months, people will be expecting you to be back to 'normal' - that is, a healthy, fully productive state. If you are not, but you look ok on the outside, there may be misunderstandings, rejection. Some people judge you as lazy, exaggerating, or accuse you of faking to get insurance benefits or attention. Or they expect too much of you, overestimating your current ability. Dealing with people's misunderstanding and judgment, suspicions, and assumptions is painful. Having to justify your lack of productivity is an extra stress on top of having the actual condition.
"The hardest part to deal with, for me, is not being sick; it is the suspicion and lack of understanding about my disability from people in my community that is the most disturbing. For example, if I am feeling up to getting out of the house for a little while with one of my family members, I am chastised for being seen out, how I look, and what I’m doing. Many people are of the opinion that if I am well enough to be out, than I should go to school and function normally. People’s ignorance has been, and continues to be, the largest obstacle that I have had to face."
Based on the well-sick-invalid framework, people expect that if you look ok, you are ok and can function normally. And if you can function OK now, you must be OK 18 hours a day. Expectations are based on appearances.
This creates a problem. With a chronic condition, you can't stay in bed and live a totally disabled lifestyle until you feel better. If you did this, you would not function at all. Many conditions require you to do your best while you feel your worst. You appear capable when people see you active, even if you are limited at other times.
Not acting sick
If you have a chronic, invisible condition, you have an important job: to look after yourself as well as possible. This will make you look better, despite your symptoms. You need to do this, because there is a cost for letting other people's opinions keep you from activities that give you health. To be healthy as possible, you might need go to the gym like healthy people do. You get up and go out, even though you might be misunderstood. To restrict yourself leads to lower function and more disability. Your illness then becomes the focus of your life and takes away more and more of the quality of the life you have left. That is the price you pay.
It is sometimes a dilemma whether to make a point of "showing" your illness. You want to appear "normal" and to fit in, not stand out and be noticed. You also want people to recognize and understand your problems. Some people struggle with this. Should they use a cane and be noticed as sick, or avoid it and be misunderstood? How much do you let people know? To a degree, it's a personal choice. What are the consequences of each option? What would either choice lead to in the long run?
Invisibility and the medical community
Many illnesses are invisible to physicians as well. This does not make your illness less real, but there can be consequences, especially if there is no diagnosis (see related article 'Living without a diagnosis'). Many invisible illnesses are not recognized or are poorly understood by the medical system. Some invisible illnesses don't get enough treatment, or the right treatment. Some patients are dismissed by the professional, which is usually frustrating or humiliating. Some have to go through painful diagnostic tests and a long series of visits to specialists, waiting for someone to make the illness visible at last.
Some conditions do not have good diagnostic tests. In the case of chronic pain for example, pain can last beyond the usual time of healing because the pain-creating part of the nervous system has gotten over-excitable - a phenomenon known as "wind-up". Nerves involved in pain transmission can fire spontaneously, respond to harmless stimuli, and fail to turn off as easily as they should. Chronic pain is believed often to be a disorder of the central nervous system. It is an alarm system gone wrong. This is not something that can be easily tested, and so it is invisible to the observer, though felt to the perceiver
One of the only ways to make invisible pain visible is through behaviour. This can create some problems. "Symptom magnification" is the term medical people use when the pain behaviour shown is much more that you would expect given the physical findings. An example: A person won't lift his or her leg in a formal test, or groans or resists, but does a similar movement freely when it does not look like a test. Fear may drive this, but it sometimes is just the desire to make the invisible pain visible. This usually works against the patient. It reduces their credibility and makes the invisible pain actually more suspect.
Coping with the invisibility of the condition
If you are dealing with an invisible condition, there are some things you can do to deal with this.
Practical steps:
Spend time with a supportive group of people who understand what you are dealing with.
Take your friend / spouse to this group if necessary.
Read up on the condition, and get those around you to read up on it too.
Decide whose opinion of you is important to you and whose is not (eg, the person in the parking lot you'll never see again - does it matter what he thinks of you using a disabled parking spot?) For those whose opinion matters, decide if you want to provide facts about the condition, and then explain what this means in terms of impact on you.
Don't allow yourself to limit your activity by your fear of other people's opinions.
Psychological steps:
Many people with an invisible condition learn the lesson that they themselves have been judgmental in the past. They lacked awareness, and compassion before, and are now on the receiving end. They realize that they are basically no different from the judgmental person, they just have more experience of both sides now. To understand other's lack of awareness helps them tolerate it.
Identify the shame or anger you feel. Ask yourself - what does this hook into? For example, when and under what circumstances have you felt this before? When was the first first time you ever felt this? What is the strong memory or negative belief about yourself that goes along with the negative emotion? Current shame or anger usually is fed in part by old negative experiences. Knowing what these are, can you see that this situation is not a continuation of the past?
Ask: How do you invalidate yourself? Others are not the only ones who judge us. How can you expect those who don't even know your situation well to be more compassionate than even you are to yourself?
Ask: what opportunities are there for you because your condition is not obvious?
Decide what you will tell people, how much you will disclose, and when in the relationship you will tell them about your condition.
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Dr. Grady has been working with people with medical problems and chronic pain since 1992. Much of this has been at a multi-disciplinary pain clinic. Other experiences have been with people with cardiac conditions, cancer, and AIDS. He says, "In 1997, I met my wife. She has had chronic fatigue syndrome and fibromyalgia since about 1994. She has shown me a great deal about living with someone with a chronic condition. She has also shown me how it is possible to find meaning and to thrive (most of the time) despite having a physically limiting condition. Most people don't have access to a multi-disciplinary clinic. I want to reach these people around the world, to help them to help themselves, and then reach out to help others. Maybe instead of a hundred people a year, I and we could help many thousands through the 10 Resolutions approach. That would be incredibly rewarding."
Reprinted with permission of author, Brian Grady. Copyright © Brian Grady 2002 - 2004. All rights reserved.
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