Multiple Sclerosis Centers of Excellence
Communication Matters: Self-Advocacy
Margaret Kazmierski, MSW, LCSW-C, CCM
MS can be a life-changing diagnosis. The unpredictability of the disease may cause self-doubt and uncertainty about the future. The chronic, fluid, and ever-changing symptoms can affect the self-esteem and emotional wellness of many individuals living with MS. A sense of control and overall positive self-esteem and wellness can be regained through self-advocacy with ourselves, our loved ones, and the health care community.
Self-advocacy can be translated into understanding your strengths and weaknesses, developing personal goals, being assertive (meaning standing up for yourself), and making decisions that reflect your best interest. An effective self-advocate is someone who lets other people know what he/she is thinking, feeling, and needing. Self-advocacy doesn't mean someone will always get their desired outcome, but practicing the skills to self-advocate when living with a chronic illness can be an empowering, positive, and important step in living your fullest and healthiest life with MS.
Becoming a self-advocate while living with MS can allow others, such as family, friends, and healthcare providers, to learn more about your unique perspective with managing MS symptoms. It can improve a sense of unity and belonging when advocating with others living with MS. It can increase awareness and educate loved ones, family, and friends about symptoms associated with MS that are not always openly discussed due to social stigma (such as bladder issues, cognitive changes, and depression). It can also empower and install a sense of hope and resiliency which in turn promotes a positive feeling of overall wellness and direction. There are multiple strategies and various resources for becoming an effective self-advocate.
Believe in Yourself
You are valuable, unique, and worth the effort to advocate for your health care needs. Know that your perspective is imperative in managing your MS wellness journey. Repeat the following affirmation each day to yourself, "I am worth the effort to self-advocate for my needs and be the healthiest person I can be."
Set Goals for Yourself
Clarify what you need and use the SMART system to set goals that are Specific, Measurable, Achievable, Results-oriented, and Time-sensitive. For example, you may have difficulty remembering all the recommendations your healthcare specialist provides for you during your visit. Or, you may realize when you get home from a visit, that you are not sure where to start or what was said regarding a strategy for follow-up care. A SMART goal could be to ask your healthcare specialist for a list of the recommendations, to get a print out of the follow up instructions/health strategies, and to outline projected dates to complete any health tasks before your next appointment (e.g. blood work completed a week before returning to the clinic).
Get the Facts
Make sure you are armed with information that is accurate when advocating for yourself. For example, if you feel you need to have a conversation about switching your disease modifying therapy (DMT) with your MS provider, make sure you do your due diligence in finding unbiased information about each DMT option. The VA MS Centers of Excellence, National MS Society, and Federal Drug Administration (FDA) websites are good resources for unbiased information on DMT's as well as medications for symptom management.
Gather Support: Nothing helps self-advocacy more than supportive family and friends. Educating family members and friends on MS and rallying the troops when you need support can be a great confidence builder and lessen feelings of isolation. Support can also be found through MS or Veteran self-help groups, MS or disabled Veteran advocacy organizations, community centers (classes and planned excursions), VA Vet Centers, and sometimes local health departments or social service agencies. Contact your local VA facility or the National MS Society to see what options are available in your area and what might make sense for you.
Communicate and Express Your Needs Clearly
Learning how to communicate effectively takes some practice, but with a SMART plan in place, you can begin to develop good communication skills. If you feel like you may forget a point, or lose your train of thought, write it down or record your thoughts ahead of time. Be firm, but don't lose your temper, if you find you have resistance from family, friends, or community organizations when self-advocating. Listen to what the other person is trying to communicate to you. Be persistent in advocating for what you need while remaining open to a compromise to move forward.
It may take several tries before you feel more confident in expressing yourself in a concise, clear, and direct manner, but practice does make perfect when advocating for yourself.