Don’t Live Your Life Focused on Disease

Advice for those with long-term, disabling conditions

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For a person with a complex, chronic illness, too much healthcare can be as dangerous as too little. It’s easy to become overly dependent on medical interventions, on drugs and treatments that while useful, are not enough in themselves to help a person achieve real health.

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What is real health? Yes, it’s medical care when you need it, but it’s so much more. I would argue that curing disease is just one of four aspects of health, as defined by Hilary Siebens, MD.

For real health, these other factors must also be considered:

  • A person’s psychological and emotional state
  • A person’s level of physical function
  • Environmental factors that sustain a person’s health (e.g. income, living situation and support systems)

If you are shortchanged in any of the above areas, it will be nearly impossible to sustain good health, regardless of how much medical care you receive. True, some patients are just too sick to be able to attend to their emotional state, their physical function and their environment. They spend much of their time and energy in healthcare facilities.

But my patients with long-term disabling conditions who achieve the best health outcomes are the ones who, by luck or by effort, optimize their life situation from an emotional, economic and physical function standpoint.

How to get beyond disease

Our healthcare system can unwittingly trap some patients into a disease-focused life. What is sorely needed – and all too scarce – are resources for mental illness and depression. People with disabilities also need greater access to rehabilitation services.

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At the same time, disability insurance and workers compensation, while well-intentioned, can end up paying my patients not to work, not to engage with people outside the home and may keep them in a protracted state of semi-poverty.

Despite these challenges, there are countless folks who have broken away from the medical model. They have managed to improve their health by forcing themselves to go back to work, engage in hobbies and put their life focus on things other than their medical condition. They are on a path to real health.

If you have a complex chronic illness, here are some tips to keep your medical care from managing you:

  • Use emergency departments sparingly. Emergency departments, unlike a primary care doctor, aren’t equipped to look at your overall health needs in any particular visit. Only use the emergency department if you have an emergency.

  • Find a primary care provider. If you have an ongoing medical condition, are over the age of 50 and don’t have a primary care provider, you need one. With an established relationship, what might have been a emergency room trip can often be handled with a phone call to your doctor’s office. A great provider will take care of the basics of your healthcare, answer your phone calls, listen to you and consult with specialists as needed. They don’t have to have extensive experience with your particular condition to give you great care.

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  • Don’t depend solely on medical professionals. While they have a critical role in your care, it is unwise to depend on medical and surgical specialists alone to stay healthy.You may end up with more medications to take, but your overall health depends on more than simply taking medications. It’s important to think more broadly about your health.

  • There are options if you don’t have insurance. If you don’t have health insurance, you are not alone – 16 percent of Americans don’t either. Consider care from alternative providers, such as a nurse practitioner in a free clinic. Speak up and tell your provider if you don’t have insurance because most providers will do their best to minimize your out-of-pocket expenses.

Most importantly, my most successful patients with chronic diseases have one characteristic in common: They are not passive. They take an interest in their treatments. They ask questions. They know the in’s and out’s of every pill they put in their mouth. Whether you have a complex chronic disease or not, decide today that you want to be this kind of patient – a person focused on real health and not simply on managing illness.

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Frederick Frost, MD

Frederick Frost, MD, is Department Chair of Physical Medicine and Rehabilitation and Executive Director of Cleveland Clinic Rehabilitation and Sports Therapy.
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