Empowering Yourself: 7 Steps to Effective Self-Advocacy
Imagine living in pain for almost a decade, and never knowing why.
You’ve been to doctors and other health care professionals who are either unwilling or incapable of helping you figure out why, or who just don’t seem to be on your side. Imagine the stress, frustration, and depression that can come as a result. Unfortunately, this happens to more people than you might think, and maybe it’s happening right now to you.
A friend of mine lived in constant pain for over eight years without a proper diagnosis. Doctors knew that something wasn’t right but didn’t believe it was severe, and were unwilling to do more exhaustive testing. However, my friend pushed hard for answers, self-advocated, and finally found one doctor who believed (and no, it was not House M.D!). A few weeks later, after several tests and scans, he underwent a successful brain surgery to relieve his chronic pain.
Effective self-advocacy is no easy thing, especially if you’ve had negative experiences with doctors in the past, faced discrimination, or if you simply lack the resources or tools on how to do it. When you know you need answers, but don’t know how to advocate for yourself to get them, it can take an incredible toll on both your physical and mental health.
This article is a step in your journey to being a better self-advocate. It’s intended to help you begin empowering yourself to stand up for your own needs, whether it’s for your health, your career, or your relationships. Remember, there is no perfect recipe for self-advocacy. How YOU self-advocate will be a reflection of YOU; your personality, your strengths, and your limitations.
Contents:
What is an invisible condition?
What is self-advocacy?
Why is self-advocacy important?
Why can self-advocacy be difficult?
7 steps to more effective self-advocacy
As we wrap up
Additional resources
What is an invisible condition?
An invisible condition is a non-apparent illness or health condition (physical or mental) that isn’t apparent, or obvious, to someone else. Invisible conditions may include, but aren’t limited to, autoimmune disorders, mental illness, neurodiverse conditions, chronic pain or fatigue, trauma, cancers, and brain injuries.
Here at Invisible Condition we use the term to include invisible illnesses, invisible disabilities, and invisible diseases.
What is self-advocacy?
I interviewed Chis Ho, founder of Conscious Studio, for the Invisible Condition podcast, and I loved his definition of self-advocacy:
“Self-advocacy is taking care of yourself, being responsible for your health, and describing, almost demanding, what’s most important to you.”
A quick Google search for “self-advocacy” yields many variations on Chris’s definition, and they all seem to include the following elements:
Speaking up for yourself and your interests
Clearly communicating your needs and desired outcomes
Not accepting “this is how it is” as an answer
Sounds easy, right? Not necessarily! The definitions open up a number of questions that I’ve asked myself and heard others ask, such as, “How do I speak up for myself?”, or “What if I’m not confident enough to self-advocate?”. These are tough questions, which I aim to address in this article.
Why is self-advocacy important?
Self-advocacy plays an ongoing role in continually improving the quality of your life. It’s very rare - in fact, I’d argue it’s impossible - for someone to get through their entire existence with all of their wants and needs handed to them on a silver platter.
Remember, even the wealthy and the famous have had to advocate for themselves at one time or another.
We’ve all been in a situation where we’ve needed to speak up for ourselves and push our own interests. Whether it’s getting a proper health diagnosis, an accommodation at work for a disability, or some emotional support from a family member, self-advocacy is often the key to leading a more empowered, fulfilled, and healthy life.
Your journey is unique, but you are not alone.
Embrace your story, learn from it, and use it to advocate for the care and support you deserve. Your courage to speak up and act can not only transform your own life but also inspire and pave the way for others in similar situations.
Why can self-advocacy be difficult?
Why do we shy away from asking for what we need, whether it’s from our doctor, our boss, or our building contractor, even when we know it’s necessary?
Self-advocacy can be challenging for a number of reasons, including:
Fear of judgment, conflict, and/or consequences
Conflicting personality traits and core values
Lack of knowledge or information
Difficulties communicating
Challenging environments or situations
Poor previous experiences
Perhaps some, or even all, of these have influenced your own journey to more effective self-advocacy. Understanding each of them, and the strategies you can employ to address them, is covered in each of the steps I outline below.
7 steps to more effective self-advocacy
The following steps aren’t presented in any particular order, so start with whichever step feels most within your own comfort zone. That said, the first step might be a good place to start to really understand, “what is my comfort zone?”.
1. Understand your personality and core values
Understanding who you are and what you believe in is a big part of understanding how to advocate more effectively for yourself. If you’re shy or introverted, speaking out may feel foreign to you. If one of your core beliefs or values is to avoid conflict, putting yourself in a position of potential conflict can be daunting.
“Building a higher level of self-awareness enables you to know the strengths that you can lean into, and the limitations that you’ll need to manage, for more effective self-advocacy. ”
For example, if you find it difficult to think quickly under pressure, especially in your doctor’s or manager’s office, consider preparing your questions in advance, or have notes in front of you with the points you want to make. Similarly, if you sometimes get loud or even aggressive when you’re advocating for yourself, consider calming techniques, such as long, deep breaths, deliberately pausing before speaking, and using “I” instead of “you” statements.
There are many resources available on the web to help you understand yourself better, but here are a few simple questions you can ask yourself to get you started:
What are some moments when I’ve been the happiest, and why?
What are some moments when I’ve been the most sad, angry, or fearful, and why?
How do I typically behave when I’m meeting with someone who can directly influence my life? e.g. doctor, manager, family member
How do I usually deal with conflict, whether it’s real or perceived?
2. Assume positive intent and outcomes
One of the biggest hurdles to more effective self-advocacy is fear.
We are often prevented from speaking up for ourselves as a result of our fear of judgment, of conflict, or of negative outcomes. We all have people in our lives whose opinions we care about, or jobs that we need in order to pay the bills. We fear being the squeaky wheel or rocking the boat, and the repercussions, real or imagined, that might result if we do.
Just remember, most people aren’t mean, malicious, or out to get you.
Assuming positive intent means believing in the best in people. Most people are well-meaning and want to help get you to a positive outcome. When something does “go south” and results in a negative outcome, it’s usually because of:
Poor communication;
Inadequate information or shared understanding; and / or
A human tendency to speak / act without thinking.
During her interview for the Invisible Condition podcast, Alicia Disantis, Founder at 38th & Kip, echoed this sentiment:
“I work to constantly remind myself that ignorance doesn’t equal maliciousness. Failure to recognize disabilities creates the opportunity for education and empathy.”
Even if assuming positive intent appears to fail and you receive a negative response, adopt a position of curiosity and ask clarifying questions. Reflect afterward on what happened, and whether it was a result of true ill-intent or simple miscommunication. And remind yourself of those times in the past when your fears turned out to be unfounded, and everything worked out for the best.
3. Do your research, learn, and educate yourself
You may not yet know what you need but now is the time to learn. Seek to learn as much as possible about your invisible condition, whether it's an illness, disability, or chronic health disorder. Why? Because knowledge is power! Here are a few ways to start educating yourself:
Learn from friends and colleagues: during my latest Crohn’s flare in 2022, I researched as much as I could. This didn’t mean I turned to Dr. Google. I turned to others who live with Crohn’s to learn how they navigate blockages, diet, and more.
Learn from health care professionals: during your appointments ask your doctor and / or health care professional lots of questions - even if it feels like they’re trying to rush you out the door - and make sure to take notes after these meetings.
Learn from non-profit organizations: educate yourself by reaching out to non-profits that are dedicated to providing education and resources specific to your condition. These organizations will often have FAQs, the latest research, and online communities and forums where you can connect with others who have a similar condition.
Seek second opinions: trust your instincts about your health. In some cases what your health care professional is recommending or prescribing just might not feel right. Don’t hesitate to seek a second opinion, even if it means asking for a new referral. Your health is your priority, not the doctor's feelings.
Get referred to a specialist: if you get the sense your doctor is not an expert in your condition, ask them to refer you to a specialist. When they do this, get the specialist’s contact details and follow up to confirm your appointment and waitlist status. Just be mindful of others also seeking care.
Also, be sure to research accommodations that are, or can be made, available to you. According to the Canadian Association for Supported Employment:
“An ‘accommodation’ is any change in the work environment or the terms and conditions of employment that allows a person with limitations in their abilities, or who faces barriers from the standard rules and conditions of work, to perform their job.”
This definition can also be applied outside of the workplace, whether it’s wheelchair ramps for your home, elevator buttons with Braille markings, or in my case, always ensuring a bathroom is readily available!
Remember, what works for someone else may not work for you. Learn about different treatments - medical, holistic, etc. - because you’ll be inundated with opinions about treatment options. As Chris Ho said:
“If taking care of myself during cancer treatment meant going towards holistic healing practices, I think you would get a bunch of raised eyebrows and concerns given this might not be the conventional way we’ve been programmed on how to take care of our health.”
4. Educate others, seek allies, and build community
Everyone will have an opinion. “You need more sleep”, “drink more water”, “take more vitamins”, “exercise more”, “stress less”, “eat more”, etc. Often, people have been programmed by years of ableism to offer solutions without asking about the root cause.
Another element of effective self-advocacy is to educate others, whether it’s friends, family, co-workers, or even doctors (yes, doctors are not all-knowing!). Be honest with what you need. If someone questions, remind them that you know best because it’s your body!
What got me through my last flare was finding people who could relate. It’s great to have people in our lives who believe in us, care for us, and love us. And it’s a game-changer to have people around us who know exactly (or close to) what we are living with.
I joined a support group for Crohn’s. I was nervous and a bit anxious because until recently, I was pretty closed off about sharing. Connecting with others about treatments, diet, and learning about what worked for others was very helpful. I also found myself helping others with their Crohn’s journey.
About a year ago, a friend reached out to ask me about colonoscopies. I shared my tips for a “pleasant” scope prep and this led to a deeper friendship. To me, finding someone who I could joke with about guts, scopes, and bowel movements raises my spirits.
Surround yourself with people who will offer perspectives, insights, thoughts, and even emotional support. Building a network will support your advocacy journey!
5. Develop your communication skills
I’ll be the first to admit that I’ve occasionally lost my cool when trying to communicate what I need to others, including doctors. Emotion can overtake us and we sometimes lose control of what we intend to say.
A simple communication model you can use is something I call “Situation, Feelings, Impact, Need”.
Situation: the current health scenario or environment you're in.
Feelings: your physical and mental state due to your health.
Impact: the effect of your health on your current life.
Need: your needs, known or unknown, related to your situation.
For example, I am currently battling diet issues affecting my bowels, leaving me feeling drained, stressed, and anxious. This is impacting my ability to venture far from home. I need support to figure out how to “normalize” my body so I can gain a better quality of life. In this example, here is how I would communicate my needs to my doctor:
Situation: “Doctor, I am currently experiencing out-of-control bowels.”
Feelings: “My situation is impacting my energy levels causing me physical pain.”
Impact: “I can’t leave the house and play with my kids, and am also battling severe depression as a result.”
Need: “I need us to find a solution to get my health back on track so I can have a quality of life that I currently don’t have. What are my options?”
In the example above, I cleared out all the emotion I wanted to inject and clarified exactly what was happening, its effect on me, what I need, and ended it with an open question. And above all, remember that honesty is the best policy when communicating your needs to others.
6. Build emotional resilience
You will be misunderstood. You will get unsolicited advice. You will get opinions from others. You will be told that, “it could be worse”. Accepting that these things will happen is the first step on your journey to building greater emotional resilience.
Resilience is the ability to bounce back to a pre-crisis state.
Building resilience takes time but I can assure you, this skill will benefit you. In an article I wrote on resilience, I outline a number of components to building resilience, which boil down to these three things:
Reflect: look back at tough times without judging yourself. Think about what these experiences taught you and how you've managed to persevere.
Reframe: accept what has happened, and change how you think about it. Instead of focusing on negative aspects, redefine what these experiences mean to you.
Reach Out: remember, you're not alone in your health journey. Learn more about your condition, communicate your needs, and seek support from others who understand.
7. Understand your legal rights in the workplace
An important element of being able to advocate for yourself and your illness or disability in the workplace is to understand your legal rights. This means educating yourself on any state, provincial, and federal laws that govern how your employer needs to support you, and understanding terms such as "reasonable accommodation" and "duty to accommodate".
For example, in the United States an employer's duty to accommodate a disability is governed by the Americans with Disabilities Act of 1990. In British Columbia, Canada, there are a number of legal acts and codes that govern the obligations of employers to their employees when it comes to accommodating an illness, short- or long-term disability, or permanent disability, such as:
It can be extremely daunting to read through the legal language of these acts and codes, so many of them provide summaries and information in the form of easily accessible FAQs. Here are some useful ones:
Manager’s Guide to Reasonable Accommodation (BC Public Service)
Americans with Disabilities Act (1990) Employer Responsibilities
If you've advocated for your legal rights with your employer, but still feel they aren't making reasonable accommodations for your illness or disability, or in the worst case terminated your employment because of your disability, it may be time to seek advice from a good employment lawyer.
As we wrap up
Self-advocacy starts with ourselves. That may seem obvious, but sometimes we need to state the obvious to cement in our minds. Ask yourself, “Am I being passive with my advocacy?” If you are passive, waiting for answers, waiting for offers of support, or waiting for others, perhaps it’s time to lean into self-advocacy.
As Chris Ho, founder of Conscious Studio, said on the Invisible Condition podcast:
“You are your best advocate. You intuitively know what is best for yourself so take the time to reflect, do inner work, and figure out who you are and what you need. Once you get firm and clear on this, nothing else really matters, including the thoughts and opinions of others that don’t align.”
Self-advocacy in the face of your invisible condition is not just a choice but a necessity for a better quality of life. It begins with understanding your own needs and extends to educating those around you, seeking supportive communities, and confidently voicing your needs.
Remember, each step you take in advocating for yourself is a step towards a more empowered and fulfilling life, despite the challenges of chronic illness. Your journey is unique, but you are not alone. Embrace your story, learn from it, and use it to advocate for the care and support you deserve. Your courage to speak up and act can not only transform your own life but also inspire and pave the way for others in similar situations.
Additional resources
https://www.easterseals.com/thrive/disability-advocacy/3-ways-to-be-your-best-self.html
https://www.understood.org/en/articles/the-importance-of-self-advocacy
https://www.betterup.com/blog/self-advocacy
https://www.masterclass.com/articles/simple-ways-to-advocate-for-yourself-at-work
