What I’ve Learned About Self-Advocacy When Living with a Chronic Condition

When living with a chronic condition or disability, finding and using your voice is a must.

Self-advocacy is the act of communicating what you need and making decisions in your best interest. Finding and using your voice is a must when living with a chronic condition or disability.

In the healthcare industry, it’s easy for our concerns to be ignored and our needs to be pushed to the side. When we’re not listened to, it can be harmful, not only to our physical health, but also to our mental and emotional health.

As patients, we hope doctors and other health professionals know best and have our best interests at heart. While there are plenty of great health professionals out there, realistically, certain outside and systemic influences can prevent us from receiving proper care. As people with chronic conditions, we must know our health is important and that we advocate for ourselves.

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My journey to self-advocacy

In 2020, I was at a low point in my life. I lost my job due to the COVID-19 pandemic. Physically, my health was declining, and mentally, I struggled to keep it all together. Little did I know, a turning point was coming.

Sometimes, a drastic and traumatic change will turn you down the path you were destined to follow. As someone who was diagnosed at 19 years old with a rare autoimmune disease called myasthenia gravis that causes extreme and severe muscle weakness, experiencing traumatic and drastic changes was something I grew accustomed to.

Since 2015, I constantly felt out of control regarding my health. I did not feel in control of my health due to countless moments of medical gaslighting and healthcare disparities.

I believed I had to listen to and adhere to whatever my doctor told me. I would not speak up for myself and would make myself small in the doctor’s office. I was frustrated, miserable, and not seeing any positive treatment results, but I couldn’t understand why.

My turning point

Finally, I had a huge wake-up call at my monthly doctor’s appointment. I explained to my then doctor that, after 7 months of a new treatment, it was making me feel worse instead of better. She told me that I was a difficult patient because no treatment was working for me and that she could no longer be my doctor. I felt frustrated, confused, and hopeless.

I realized I had to do something different if I wanted to see different results. I had to speak up and advocate for myself. I was tired of not being heard. I was tired of being told I was doing something wrong or that it was all in my head. It was not. My experience and symptoms were real, and it was time that I was treated as such. I realized no one will advocate for me better than I.

I took matters into my own hands: I found a new doctor who encourages me to voice my concerns and expectations for my health journey. When I finally felt seen and heard by my doctor, I switched my mindset. I turned my defeatist mindset into a positive one. I even started an infusion medication that I was doubtful about.

After that leap of faith, I can now say I am feeling the best I have ever felt — and I even feel hopeful about remission. Remission is something I could never have imagined for myself and wrote off consistently, but now I feel extremely close to achieving it. It all started with advocating for myself, my wants, and my needs.

How you can practice self-advocacy

• Identify your needs, wants, expectations, and goals for your health.
• Educate yourself and do thorough research on your condition.
• Figure out the best way for you to communicate with your doctor and health team.
• Stand firm, and do not allow outside influences to change your desires and expectations for your healthcare.
• Effectively communicate your health goals and desires to your healthcare team.
• Say no when you want to. It’s OK to say no.
• Follow through on the health and treatment goals and desires you are seeking.

Your experiences should never be ignored when it comes to your health. You have every right to voice your opinions, concerns, and feedback to your healthcare team. Your health starts with you.

Take control of your health and start using your voice. There is power in advocating for yourself — it could be the key to feeling your best and living your best life.