Self-Advocacy Education for Chronic Conditions
After some very helpful feedback about my video, I realized my message was not coming across how I wanted it to. My intentions are to educate and empower my clients to advocate for themselves. I provide the skills, knowledge and framework for them to confidently do this. While I am an advocate, I teach others to do that on their own for themselves. With A LOT of help from Trevor Croft Media, I am proud to present my new awesome video! Be Well!
I was looking through music videos on YouTube to see if I could find something that would “fit” with what I am going through. I am in this mixed space where I am experiencing disappointment, resilience, excitement, motivation, and frustration. I am having adult growing pains. I am on the edge of living my best life, and being chased by my biggest fears. I didn’t know if I wanted an inspirational, upbeat song, or something that expressed a small amount of defeat. Then, this song found me:
First of all, people dancing unapologetically… Yes, Please! Second, “say what you want to say, and let the words fall out” Amen! I am in a time where I must be brave. I want to be brave enough to know life will work out. It will work out so that I keep living and loving and dancing unapologetically. Life working out does not mean rainbows, butterflies, and unicorns. For me, it is all about survival and being all in. Whether I am surviving cancer, anxiety, or depression, I keep going. While I feel the pain rather intensely, it is nothing compared to how I get to experience joy and triumph.
So, I tend to narrate my life. I am expressive and out loud about most things that happen. I am extremely hyperbolic with my words. If I have a headache, I have “a dull stick stabbing my eyeball into my brain”. If I am excited about something, I am “doing backflips and high-fiving the entire world”. This is who I am. I am not very subtle. I don’t keep much to myself. I get really hurt if I feel misunderstood… so everyone else who does “understand me” gets to hear about it for hours. Whenever people say, “who cares?” I have to admit that I do.
Here’s how this all comes together. I have to dig deep, be brave, not care so much, and dance my imperfect little self silly. My growing pains are about self-acceptance, and pushing through doubt. Now is my time to stop apologizing, and reclaim the space I keep giving to others because I somehow think I don’t deserve it.
This week, remember to dance your heart out, say what you want to say, and be brave. You can be amazing!
Be Well
Ok, I have figured out how to add the audio piece again. The point is to be able to hear it. The video is just the same picture throughout so you can focus on the words.
For those of you who are familiar with my SPEAK model for self-advocacy, you will know that it is the core of my work. For those of you who are not familiar, you can read about it here. After months of working toward my dream of having a successful small business, I have had several moments of doubt, feeling overwhelmed, and small flashes of wanting to just give up. I can’t give up. I won’t give up. I know this is the work I am meant to do and all of my future clients will not receive my services or be impacted by my experience, education, and drive if I stop pursuing my dreams. On top of that, I will not have been true to my model.
It is a step-by-step way to be a successful self-advocate. On my journey, I have been reminded by a few people that in my pursuit of forming a business to serve others with this model, I too have followed the steps. Having no background in business, marketing, website design, blogging, social media for business, and video production, I have jumped in and educated myself in all of these areas. I am not a professional in any of them, but I have researched, tried and failed, and had hours of discussion to gather information from experts. I have sorted through advice, asked questions, and changed my focus a number of times. I have been uncomfortable, unsure, excited, and proud. Right now, I am writing my 21st blog post!!
Every time I have gotten to a point of frustration, I have pushed forward and reached out for help. I have been Self-aware, identified my Problems, Evaluated by researching and constructing solutions, Acted on my plans through networking, asking for help from others, and finally pushing myself so hard to KEEP GOING.
Because I followed my model, I have learned a lot about starting, building, and maintaining a business. I have formed an LLC, opened a business bank account, decided on promotional products, made awesome business cards, and met with business mentors. To continue to grow and learn more, I attended events and retreats and made connections with people with specialized knowledge. I have created a website and blog, opened social media accounts, cold called businesses, published articles in a popular online publication, and have spoken about my services with confidence. I am proud of what I have accomplished.
The thing that has continued to keep me going is the support of others. People are showing up when I ask for help. Not only are they showing up, they bring gifts! From the kindness of their hearts, people have shared their successes as a way to guide me, created my beautiful logo, volunteered to help me create a marketing strategy, and helped me design a beautiful website to invite much needed business. This is no accident! It truly does work to advocate for yourself! I open my heart through vulnerability, kindness, humor, and honesty. Those things have brought abundance into my life! They have taught me to practice gratitude, help others, and keep on my path of self-advocacy. As I write this, I am filled with joy about sharing my experience.
Not only have I experienced this generosity in my business, I have experienced it from caregivers and friends on a regular basis. It certainly feels like magic, but it is not. I have created this life. I have pushed through hard times. I have faced terrible illness. I have never given up completely. This is because of you. Everyone reading or listening to this had been a part of my success. I have created this model to share what I have learned and what guides me on a daily basis. I refuse to navigate my life alone. I will advocate for myself for the rest of my life. Please take a moment to consider all of the things I am writing about and see the relationship between what I have created, and the amazing outcomes it has produced. I invite you to think about how self-advocacy plays a role in your life. Please share something in the comments to inspire and engage with others about your own self-advocacy. Don’t forget that the most important part of the SPEAK model is to KEEP GOING.
Be Well
Last week, when I shared my post, I felt empowered. I felt like I had faced my fears by writing about the thing that scared me the most. I realized it wasn’t about how people reacted about what I had to say; it was about having the courage to tell my story. Right away, I went to write my next post. I had a rush of ideas about how I would write about my anxiety and I knew just how I was going to do it. I even wrote a first draft of that post. I am going to have to save that draft for another time.
In the last few days, I have thought a lot about about having a voice, speaking up, and advocating for yourself. I’ve been contemplating what that really means. Having a voice means you are making the choice to take on change, to be responsible for your opinions, desires, and facing the fact that NOT EVERYONE will agree with you. When you don’t use your voice, you still have a choice. You are choosing not to participate in the conversation. If that conversation is about you, you are giving others the right to speak for you and make decisions about your life.
For some of us, it is hard to make a decision, stand behind our words, and have the courage to speak up. Trust me, I am extremely familiar with this difficulty. Most times, I have a hard time sticking with my decisions about what I want to do for dinner. When it comes to my health and well-being, I have no problem speaking up about what works for me and what I will and will not accept. This is my personal victory. I see what I want, research and gather information, and develop a plan, and try to implement it. While the plan might not work out, I know the key to finding my eventual success is to keep going. These actions are a living example of the SPEAK model of self-advocacy I developed to guide myself and others to lay the groundwork and create a path for action as a result of having the courage to speak up.
This week, I experienced feeling like my voice was tested. I felt like I was being told how to feel. I was told to feel angry about cancer and like I had been cheated, not given options, and had been placed in the minority. The thing is, I don’t feel or think any of these ways about my healthcare. It is insulting when an organization or public figure says what they are saying represents the entirety of a group. I have a feeling in today’s political climate, most people have felt this way in one form or another. This is not about those politics. This is about making the choice to be heard and following through with that choice when faced with oppression.
NO ONE has the right to tell you how YOU think or feel. That is the wonderful thing about our personal thoughts and feelings. They are always ours. Will they be challenged? Yes! Will someone persuade you to think or feel a different way? Maybe. Something awesome is you may even change your mind based on new information. The beauty is it is YOUR CHOICE. Because thoughts, feelings, and opinions are internal and personal, we don’t give those up. We do however, run into times when what we do give up is our voice. Whether we feel restricted, unheard, apathetic, or bullied, somehow we manage to lose our voice, or even give it away.
I am not saying people are not ever angry, cheated, not given options, and are placed in minorities. I am speaking for myself. I will not be told how I think or feel. I was doing just fine until I was told I am angry. I am not angry I had an experience with a life threating illness which might have been different than the experience of others. I was given options about treatment. I was treated with dignity. I was cared for by a team of professionals who made time to hear what I had to say and put in an extra effort to provide me with information and research to make decisions which felt right for me. I was given fertility options. I was heard when I said I was done receiving chemo. This was respected and my treatment ended. Some of this was the good fortune of having a team of excellent professionals. A lot of it was because I made it clear from day 1 that I would be my biggest advocate. I am not a doctor. I don’t have a background in treating illness. I highly respect the people who do. I respect them even more when they recognize I am part of the team, I have a vote, and I can ask questions.
When thinking about speaking up and having a voice, the only thing frustrating the hell out of me right now is that my voice about self-advocacy isn’t loud enough. I have not quite figured out a way to get in touch with others to provide my services to strengthen their voices. I have very strong thoughts and feelings about providing others with education about how to SPEAK and to have the choice about when they want to do it! I have no interest in speaking for others. I am invested in the victory of seeing others speak for themselves. I want this so badly and I will use my own advice, KEEP GOING, and push through my frustration about my voice which is not yet loud enough to be heard. One day, it will come out LOUD and CLEAR followed by the echoes of others who have found a way to be heard!
Be Well and Be Heard
April 8th was my birthday. I love birthdays. I love them even more now that I have made it through some life threatening stuff. Some people hate birthdays. For some, it is because they really don’t like the attention. For others, they don’t like feeling old. 35 seems like a milestone…I feel that way about all of the multiples of 5 birthdays. I’m not sure why. This birthday kind of feels like a re-birthday. I have come so far and grown so much over the last year.
This weekend, I spent time with my family and had some time to think. It isn’t unusual for me to spend time with my family, they are part of my support system. They let me be me. When I need to rest, they don’t make me feel like I should push through my fatigue. They tell me to rest and ask if they should wake me up or just let me sleep until I am ready. I don’t feel pressure to do anything but take care of myself. When I am with my family, the priority is to share stories of our lives and laugh. We laugh about everything. Everyone in my family is extremely funny in their own way. It is enjoyable to laugh with all of them.
Sometimes I feel guilty about how I spend my time in other parts of my life. I feel more pressure to be productive, perfect, and to please. I compare my pace with the usually faster pace of others. I tell myself I should do, say, or be certain ways. My favorite expression I use when I am counseling is, “Don’t should on yourself”. Trust me, it is easier said than done.
Acceptance is a big part of wellness; so is authenticity. In my work, it is so important to me to encourage others to find a comfortable way to be accepting and authentic. I am most effective when I follow my own advice. I want to be successful with my business SO BAD that I sometimes feel my authenticity slip. I get trapped in the “shoulds”. When you market your business, you “should” do it a specific, proven way. When you write a blog, you “should” cite and link tools for your readers. Your readers “should” be called to action after reading what you have to say.
When I step back and read what I have written, I feel my authenticity return. The only thing I “should” do is be myself. In the past, I have been successful being honest, raw, direct, and authentic. I’ve been told it is refreshing and unexpected. It is rewarding and, at times, painful. I choose to show others what it’s like to be me whether is is good, bad, ugly, silly, sad, confusing, offensive, or exciting.
To be effective and successful, I must be me. This means sharing hurt and frustration, celebrating my strengths and successes, having difficult conversations, searching for information, and taking time to rest. Sometimes, I don’t want to share resources or links like I “should”. I just want to tell you what it is like to go through my journey with my chronic conditions. I want to inspire and empower you to do your own work, congratulate yourself for finding an awesome resource on your own, and invest in your own wellness. I have hope that my authenticity will be “enough” and I don’t need to answer to the “shoulds”. I can follow my intuition and heart about how I want to serve others.
I want others to speak for themselves, be their own advocate, and fight for what they want. I took so much time developing my SPEAK model to teach others to do just that. The easiest way to teach others is by example. I model how to be a good self-advocate. It isn’t always easy to be honest and raw. Facing that fear has, at some points, been the push to accomplish what I need. To do this, I move past the “shoulds”, face my fears, follow my heart, and wait to see the positive results that come from the process.
So why do I love birthdays so much? Because I can celebrate that I have lived through another year full of experiences. I have lived an additional year with wisdom, ideas, disappointments, successes, perspectives, and hope. How amazing! This is what propels me forward. Every year, I will get to grow more, laugh more, speak more, and continue to practice what I have learned in years past. It is nice to have a marker like adding a number to my age to celebrate what living life means to me. More chances to be accepting and authentic. More perspective…
Be Well
