Caregivers of Rare Disease Patients Must Also Care For Themselves


Allostasis is a concept coined by Joseph Eyer and Peter Sterling, colleagues at the University of Pennsylvania. In 1981 they published a paper which contested previous theories on the natural state of the human body. Until that time, it had been widely understood that our bodies are constantly trying to maintain the most stable position possible. However, these scientists argued that our bodies are actually incessantly trying to predict what we will experience next. Using this prediction, they do their best to prepare.

Eyer and Sterling go on to explain that for those individuals who are in a state of “chronic arousal,” negative health outcomes are likely. When the body is stressed, energy is spent on coping mechanisms. It changes the hormones, glucose, and blood pressure within the body to meet the anticipated needs signaled by the stress.

This idea would help to explain why those living in a near constant state of stress (those suffering financial hardships, racism or other discrimination, divorce, etc.) also have higher rates of illnesses. Hypertension, coronary disease, and cancer are all found in greater numbers in populations like these.

The Body Budget

Lisa Barrett, from Northeastern University, discusses the idea of the brain as a “body budget.” She says that the brains primary purpose is regulating our body, despite the fact that we associate it most often with our emotional state. The brain keeps track of the resources our body has and what it needs. When the body does not have all of the things it needs, it is placed in a deficit. A long term deficit results in illness.

Debts compound and the immune system is ultimately compromised. Chronic illnesses ensue.

Achieving a Healthy State

Maintaining a state that is absent of stress seems like the logical conclusion. Of course its not that easy. These researchers argue that change is needed at the societal level.

“Not all of us are afforded an equal path to good health, unfortunately.”

Financial deficits and social tensions can place individuals at a extreme risk for illnesses. These scientists say that biological conditions ultimately have cultural, political, and social solutions.

 ” Symptoms of social malaise cannot be alleviated with pills alone.”   

Our health is intertwined with politics.

But there are also other factors that can impact our health and well being, of course. For instance, when you are a caregiver to someone with a rare disease, your time you have to take care of yourself can feel extremely limited. But it is so important to take the time to ensure your own health is taken care of, so that you can remain well not just for yourself, but for the person you love.

It starts with making time for yourself. To sleep enough, exercise, and eat well. We have to show our bodies that we are giving them the things they need so that they can do their part to protect our immune system. It’s not an easy thing. It takes hard work and discipline to stay healthy. But most importantly, as a caregiver, it takes emotional strength to remember that you also have to be a priority. If you need to think of it in terms of taking care of yourself so that you can take care of your loved one, do that. They want that for you too. Your quality of life, your needs, and ultimately your well-being are also of paramount importance.

Take care of you, because you matter.

You can read more about this perspective on care here.

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