Self Advocacy Skills and Chronic Illness

Posted on April 9, 2018 by kerri

If you live with a chronic medical condition or a disability, there are many times that you have to speak up to get the things you need, whether it is medical care, coverage for medicines or medical devices, assistance—or, conversely, if you would like for people to let you be more independent! These situations are where self-advocacy skills come in.

a dirt road lined with many tall trees

What is self advocacy?

Self-advocacy is—simply put—speaking up for yourself or acting in your own best interests to ensure you get what you need. [1] It is “referred to as the ability to articulate one’s needs and make informed decisions” related to those needs. [1]

For instance, if you believe you need more medical testing to address an issue you are experiencing, but your physician does not agree, self-advocating is crucial in finding a pathway to accomplish what you feel you need. Options for self-advocacy in this situation could be explaining your reasons why you feel you need the extra testing to your doctor, discussing with your insurance company, asking for a referral to another doctor for a second opinion regarding the testing and your diagnosis, or finding a different doctor on your own without a referral.

Self-advocacy is determining what you, as the person living in your unique circumstance, need, and strategizing to ensure you overcome the barriers that may prevent you from getting what you need.

Medical ID as a form of self-advocacy

Sometimes, you cannot advocate for yourself. If you have a medical condition such as a life-threatening allergy, asthma, diabetes, or epilepsy, as well as many other conditions, you may be unable to communicate when it matters most.

Wearing medical ID jewelry is a form of self-advocacy in an action.

Medical ID can advise healthcare providers of your wishes, and provide emergency responders with a contact person for accessing Do Not Resuscitate directives or organ donation registration if needed. A medical ID bracelet or medical necklace can also note how to access your care plan—for instance, is it on your record at a certain hospital or doctors’ office, or do you have a copy in your wallet?

Learning how to self-advocate

Self advocacy is a skill that is learned—often as  a result of frustrating medical circumstances. However, there are many online resources available to help teach self-advocacy skills—depending on your medical condition or disability, you may find bloggers or organizations who have put together self-advocacy toolkits, which can be a great place to start. The resources available are of course too numerous to list here. If you cannot find resources online, contact your local disability or medical condition non-profit/charity for resources.

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