Self-advocacy is hard work. We’re likely advocating for ourselves in tiny ways all the time, and we don’t notice when there’s little to no resistance. Frustration grows when we meet opposition and live with pain and unmet needs.
Barriers to self-advocating: Sometimes, I don’t know what I need, I’m unsure of what resources exist that could help, or I’m not being heard by those who could help me. Even if they want to help, they might not know how.
Cultural stereotypes breed internal barriers that are often met with very real external opposition. Some will see self-advocacy as being selfish, difficult, bothersome, or unreasonable. They’ll see it as a challenge or threat to them in some way. Just as that isn’t always true, it’s important to recognize that successful self-advocacy might not yield the results we seek. The burden falls on us to advocate for our needs, and we can’t control how others will respond.
Tips for self-advocacy and being an ally:
What might help could be learning more, speaking up, seeking advice, or realizing there are other options for treatment, relationships, and the future. Sometimes the fix is to chart a new course.
Soft skills like team-building, facilitation, communication, and compassion go a long way to navigating interactions for successful self-advocacy. The same skills are helpful for allies who want to help us navigate our challenges.
My favorite and most helpful allies haven’t always given me what I asked for. They listened to me, made suggestions recognizing they might not be right, praised me for what I was doing, and encouraged me when needed. They may have seen what changes I needed before I did, but they didn’t push harder than I could accept at the time.
I aim to emulate the friends, family, instructors, medical providers, coaches, bosses, and counselors who cared, believed me, understood they didn’t know everything, and helped me navigate through many challenges. They knew they couldn’t fix things for me, but they could be an ally and resource in my journey.
Advocacy examples:
At fitness classes, I’ve learned to be clear with instructors about what my specific issues are, things I avoid, and areas that need extra attention. I’ve learned instructors who use boot camp methods of encouragement not only don’t work for me, they sabotage my health goals and MS symptom management needs. I will naturally push myself harder than I should, and it contributed to many MS exacerbations over many years before my MS diagnosis. It’s taken a lot of effort to right-size my fitness activities, monitor when I’m pushing enough or too much, and feel confident that I’m doing what’s right for my health. I’m always cautious with new fitness instructors and activities and want to see if we’re a good match.
I need an instructor who will help me find the right level for my needs, not someone who will push me to my highest exertion level for the duration of a session. That’s when I have frustration, resentment, and feelings of inadequacy that don’t serve me. I make sure to advocate for myself by explaining my limitations and goals. Instructors who challenge me, show compassion, respect my limits, and praise me for my efforts make the cut.
Medical care providers: At the neurologist’s office, I learned that I tried hard to be a good, likable patient, and I wasn’t being as firm or persistent as what would be helpful for my health. I brought a friend with me to my neurologist appointments a few times, and they were surprised by my behavior. They knew professionally I was confident and clear about things. I wasn’t aware I was behaving timidly, but when pointed out I agreed. My friend encouraged me to use my professional skills at my doctor appointments, and it has helped me immensely.
I was lucky to have a primary care provider who was AMAZING. Previously, I’d had doctors who dismissed issues I mentioned. I wanted things to be fine, and they supported my desire to dismiss issues as not worrisome.
The one who was amazing? She would call and make appointments for me from the exam room. When suggested follow-up appointments were too much for me to take on immediately, she accepted my plan to wait with respect and compassion.
They praised me for my efforts when I was down on myself for not following my health plan perfectly. My favorite and most helpful medical care professionals granted me grace. They taught me I was reasonable and worthy, I didn’t need to expect perfection of myself, and I not only could but should express my needs.
Physical Therapist: When they suggested a 30-minute per day strength and balance routine for me, I asked them to create one that was 15 minutes. I understood 30 minutes would be better, but I knew I was unlikely to do it consistently unless it was shorter. I didn’t enjoy it, and I preferred other activities. In this case, self-advocacy was pushing for what I was willing to do rather than what they thought I should do.
Personal and Professional Relationships: I’m a fan of discussing goals for the day, week, and weekend. I’ll advocate for what I need and want, and I’ll ask them what they need and want. It helps to collaborate on a plan that serves us both. It’s taken me a lot of time and practice learning to be direct and discuss things. It can feel risky being open to rejection and judgment, and it’s been rewarding to have grown enough to be able to have tough discussions with friends, family, and my partner in healthy ways.
At work, I’m open with what I do to accommodate my health needs, and I support my team when they need to address their own health and family needs. The rewards of supportive and flexible relationships individually and collectively far outweigh the inconveniences.
I’m grateful for all of the mentors and advocates who have taught me with every interaction. They’ve improved my ability and willingness to advocate for myself, and they’ve shown me how I can be an ally and advocate for others. They may not have intended to make such a difference, but they did to me.
Self-advocacy can change a life for the better. Collectively, we can improve the lives of many.
