Being The Leader In Your Care

It can me very challenging to self-advocate when we have lost our sense of self-worth, when we feel hopeless, that we do not matter. After feeling unheard, how do we learn to speak up again, to believe anyone will hear our plea. After feeling abandoned, how do we learn to trust?

First, it is important to identify these beliefs and the negative messages we have internalized and find ways to combat them. Taking note of these messages is the first step to confronting them and disproving them. You are a valuable person. You are worth the effort to advocate for.

Next, believe in yourself, believe in your inherent ability for self-determination. You have the power within yourself to motivate change and determine your needs and goals. Identify what those needs and goals are, and what objectives you need to accomplish them.

Know your rights. You have the right to equality under the law. You are entitled to respect as a human being. You have the right to well-being.  Identify what you need, what you are asking for. Be clear about these needs and how you would like to accomplish them.

Educate yourself, education truly is power. When you advocate for yourself, you need to know what you are talking about or asking for. Check with people who have expertise in what you are considering. Ask others who have issues similar to yours. Check references in the library. Contact agencies and organizations for information and support. Contact social workers and patient advocates within agencies. Be the expert in your own care, after all you are the most invested.

Using the information you have gathered, plan a strategy that you feel will work to get what you need and want for yourself. Think of several ways to address the problem. Ask supporters for suggestions. Get feedback on your ideas. Then choose to take action using the steps you feel have the most chance of being successful. Gather support, it is often helpful to have the encouragement of a loved one, caregiver, a professional patient advocate etc. My mother always shared the belief that when you are in the hospital it is important to have someone with you advocating for your needs. If you are alone, there are social workers and professional patient advocate.

Target you efforts, who is the person, persons, or organization you need to deal with to get action on this matter? Talk directly with the person who can best assist you. It may take a few phone calls to discover which organization or person can help, or who is in charge, but it is worth the effort. Keep trying until you find the right person. Maybe the right person is your spouse or another family member. Perhaps it is an insurance company, your doctor, a case manager, a vocational rehabilitation counselor, or a grovernment agency such as the Social Security Administration.

When you are asking for what you need and want for yourself, be concise. Stick to the point. Don’t allow yourself to be diverted or to ramble on with unimportant details. State your concern and how you want things changed. If the other person tries to tell you reasons why you cannot achieve what it is you want for yourself, repeat again what you want and expect until they either give it to you, help you get it, or refer you to someone else who may be able to help. It is helpful to role-play different scenarios with a supporter or a counselor. Don’t lose your temper and lash out at the other person, their character or the organization. Remember they are also entitled to respect.

Don’t give up! Keep following up on what you want. Always plan a follow-up on what was discussed. Continue to motivate  yourself to get what you what you need for yourself and your treatment plan. It can be difficult to self-motivate when you are sick or in pain, it is important to have external supports.

What happens if the answer is no, then what? For example, if you need a physician that is willing to partner in your care, to be proficient in your condition, to listen to your needs with respect and they refuse to act as a partner, it may be time to move on to a provider who will meet these needs. This may be frustrating, but it is important to understand that this is not a loss, it is simply diverting your path in a direction toward better care.

Finally, address why you may be struggling with the idea that you are worth having your needs met. Next, know the rights and needs you are entitled to and arm yourself with facts. It is always helpful to find support in these efforts. Finally, stay motivated and never give up!




Author: In Pain Or Shine

In Pain or Shine is the blog of Anchor Counseling Services of NJ and written by Jeannette Rotondi, LSW a person with several chronic pain conditions as well as a licensed social worker. Jeannette began her journey with chronic pain in childhood with colonic dysmotility, her pain increased at the age of 29, due to chronic migraine disease and Ehlers Danlos Syndrome and several other co-morbid, painful conditions. Jeannette has also volunteered for several organizations, such as Chronic Migraine Awareness, Inc, Migraine Mantras, and U.S. Pain Foundation. Through this blog Jeannette hopes to help others with chronic pain, through education, empowerment, and support.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s