Becoming a Self-Advocate
Last updated: December 2021
"No, it isn't. Eat more fiber." Those words from my new neurologist spurred me to greater action. It was these words that struck me and shook me. I soon found it imperative that I become an active advocate for my own health.
Don't get me wrong, I was already involved in my healthcare. I asked questions and listened dutifully. I knew the numbers from various tests. I was definitely playing my part.
In preparation for my visit, I did my research and was planning only to seek additional information from my MS specialist. Constipation is a known problem for people living with multiple sclerosis. Research has shown that constipation is present in half of the patients with MS.1.
What is self-advocacy?
After this appointment, I needed to find a way to be even more involved and more engaged. As the primary stakeholder in my own health, I needed to establish myself and demand to be taken seriously. Advocacy is a word we hear more and more when talking about healthcare, but what does that mean? What does it mean to advocate for oneself?
A basic definition of self-advocacy is the ability to speak up for yourself and the things that are important to you. Self-advocacy means you are able to ask for what you need and want and tell people about your thoughts and feelings. Self-advocacy means you know your rights and responsibilities, you speak up for your rights, and you are able to make choices and decisions that affect your life.2
Standing up for yourself can feel scary. From an early age, we are taught to obey authority figures. Our parental figures, teachers, and law enforcement were the first people I was taught to obey. I was told that these people had my best interests at heart. Doctors also fell in that category of trusted authority figures. The problem with these instructions is that they do not get updated as we get older.
Yes, there are times when we need to listen to the directions of those in authority. However, there are nuances to that. You are the expert about yourself and you should be the captain of your health ship. Healthcare providers can give you information and insight and recommendations. Ultimately, it is your decision. Feeling comfortable in your own power is the first step of advocating for yourself.
Self-advocacy is about personal power
It is about the power you have to determine your healthcare. As the saying goes, "With great power comes great responsibility." This means that you have your duties as a self-advocate. Probably the most important of those is to be well-informed. You will need to take the time to learn about your illness and as many associated issues.
That may mean teaching yourself a few medical terms or about symptoms. Becoming informed can also include participating in webinars or presentations. Asking your healthcare providers is part of that as well. Do your due diligence using unbiased sources before meeting with your healthcare provider, especially if there is a specific topic you want to discuss.
From choosing whether to use a disease-modifying therapy (DMT) to what medications to choose for managing symptoms, the more you know, the easier it will be to make the decisions that will come your way.
One major point! The Internet has a vast array of resources available to you. Be savvy about where you chose to get your information. Popular websites can contain information that is not right for you or your situation. Top hits on a website search just mean they are popular, not that they are accurate. Compare a variety of sources and use trusted sources of information. Some of those preferred by medical professionals include:
- MedlinePlus and DailyMed which are operated by the National Institutes of Health.
- MyHealthFinder provides important prevention and wellness information for consumers that's evidence based, actionable, and easy to use.
- FamilyDoctor.org has a webpage that can help you to determine reliable resources.
How I practice self-advocacy
For me, self-advocacy meant not simply knowing about my health but taking the initiative. Rather than waiting to mention health issues at my regularly scheduled meetings, I contacted my healthcare providers when new symptoms presented themselves or became worse. If I was having an issue with chronic constipation, I let someone know.
If I was not getting the attention I needed, I did not hesitate to get back in contact. It means I may have to respectfully push back on recommendations that do not fit me. For instance, I am described in medical terms as morbidly obese, but I have determined that gastric bypass surgery is not for me. I decided this by educating myself on the procedure and the after-effects. I looked at the benefits and risks. I applied them to me and my own health.
My decision to not pursue this medical procedure has required me to say "No." emphatically and repeatedly. I advocated for myself and my well-being by gaining knowledge, knowing my own situation, and seeing how a recommendation worked or did not work, for me. I have aimed to practice this with every major medical decision.
Becoming a self-advocate is not an easy journey for many people
Self-advocacy can go against all our learned instincts. It can be the opposite of what were are trained to do. It means putting yourself at the center. It means that you may have to go against a medical recommendation. It means spending time and energy learning new vocabulary words and all about multiple sclerosis.
Self-advocacy is work. It is work that is all about you and you are worth the effort! Listed below are a few resources to get started on your own self-advocacy journey:
- Patients Rising:5 Things You Should Know Before Your Next Doctor's Appointment
- Multiple Sclerosis Centers of Excellence, U.S. Department of Veterans Affairs: Communication Matters: Self-Advocacy
- SelfAdvocateNet: What is Self Advocacy
- Multiple Sclerosis Association of America: Self-Advocacy for People with Multiple Sclerosis
- National Multiple Sclerosis Society: Self Advocacy Overview and Worksheet
Go forth and be the captain of your healthcare ship. Ships Ahoy and Bon Voyage!
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: