Keep Doing What You're Doing
Keep Doing What You’re Doing is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help me adapt, cope and celebrate this adventure on earth.
Wednesday, July 23, 2025
Being Cool
Monday, June 23, 2025
Self-Advocacy: Challenges, Tips, Mentors and Allies
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.
Thursday, May 29, 2025
The Joy of Imperfection
If I could talk to my younger self, I know she’d be surprised, excited, proud, and likely a bit skeptical to learn that I’ve genuinely found fulfillment in imperfection.
Monday, April 14, 2025
Spring Presents
Wednesday, March 12, 2025
Burdens Shared
Tuesday, February 11, 2025
Fortifying Relationships
- Offer to listen, invite them to share, and make it clear there’s no expectation or pressure.
- Check in by phone, text, or email, and let them know they don’t have to respond.
- If I’m genuinely there for them at all times, make sure they know it and believe me.
- Be there for them when they reach out.
- If you’re able and it feels genuine, light up when you see them.
- Ask open-ended questions that aren't leading. Avoid asking, “So you’re doing well?” Try “How are you doing?” If they’re not doing well, they won’t need to overcome an incorrect assumption before sharing whatever they’re comfortable sharing.
- Acknowledge that my own problems may be silly and aren’t as big as theirs, but they’re what I’m experiencing. Sometimes people are sick of dealing with their own issues and would like to hear what’s going on with you.
- Share without competing. Allude to how my experiences may be similar, but be clear that I understand their situation may be completely different. How I deal with similar issues or life events may or may not help them.
- Validate their experience before providing reassurance. If the validation step is skipped, it can appear to be dismissing their feelings and reality.
- If I get emotional, be clear that the topic is hard but I’m glad they’re sharing with me.
- Be patient, and let the pauses linger. What feels like an awkward pause can be received as patience. Quiet moments help allow time to organize thoughts and gather the courage to share.
- Avoid interrupting, it can disrupt their train of thought. If I do interrupt, I’ll try to bring the conversation back to the point where I interrupted them.
- Don’t yuck someone else’s yum. What works for one doesn’t for others.
- Be okay with not agreeing with them and not understanding everything. Trust they’re doing their best, and respect their decisions.
- Appreciate the relationship, and tell them why. Share how our relationship and times together help me and make my life better.
- When people ask for help, let them know how much they’ve helped me in the past. Share how being there for them is important to me.
- Sometimes my reactions can be misconstrued or confusing. If I’m really absorbing something, I might stare and not say anything. It can sometimes lead people to reach conclusions that weren’t my intention. If I realize later that this might have happened, I want to let them know that my reaction was sincere contemplation and not judgment.
- If I perceive an interaction as difficult, follow up later. Ask if it’s okay to bring up what happened and what I think I could have done differently. See how they feel about it, and see if they agree or have other insight. If they don’t want to talk about it, reinforce the relationship and let the issue go.
Monday, January 6, 2025
New Year’s Reflection
One thing to remember about New Year’s resolutions: They are not required. If you don’t want to make any, don’t. I like them for the feeling of a fresh start and hope for a better future, but I also know that I need to be ready before I make a change. If I try before I’m ready, it will end with feelings of failure and guilt.
- What did I love about last year? Why?
- What was challenging or annoying? Why was it hard?
- What did I learn? How can that lesson help me in the future?
- Where in my life did I improve or lapse? Why do I think it changed?
- Was there anything I needed or wanted that I didn’t have? Is it possible to have them? If so, how would it be possible? If not, do I need them?
- How does answering these questions make me feel?