10 Ways You Can Advocate for the Invisible Disabilities Community
To recognize Invisible Disabilities Week, we invited patient leaders of the invisible disabilities community to join forces to support, empower, and raise awareness for their communities. During this community chat, we discussed key topics and issues impacting patients with invisible disabilities such as self-advocacy, the workplace and disability, and overcoming the challenges of “invisible” symptoms.
Together, we curated a list of actionable ways invisibly disabled individuals can advocate for themselves and others, and ways their community can support them, increase representation, and deepen the public understanding and compassion for disability.
Be sure to connect and collaborate with the following patient leaders so we can all continue advocating year around. After all, the patient community is stronger together.
Tips for Self Advocacy
Patient advocacy starts with advocating for yourself.
Advocating for an entire community of patients is a noble and admirable quest, but it can also be emotionally and physically draining. It’s critical to make sure you’re receiving the care you need so that you can show up compassionately and authentically for others while reducing stress and burnout in your own life. Plus, before you can truly guide others through the challenges of life with an invisible disability, you need to know how to chart those murky and choppy waters yourself. Our network of patient leaders generated a few brilliant tips for your self-advocacy, so you can ensure that you’re advocating for yourself effectively.
1. Balance Your Personal Experience With Factual Information
It’s challenging to manage others’ expectations and set personal boundaries in the first place, and it’s even more difficult when you’re living with a medical issue that others can’t “see.” Choosing how you explain your disability to others is a personal decision, and may even vary from person to person, and relationship to relationship. Thus, it’s important to consider your connection and comfort level with the person you are discussing your disability with. As CCL patient leader Michele says: “[It] depends on how close you are to the person, and whether or not you think they’ll be open to boundaries.”
Nonetheless, there are a few general steps you can follow to make it easier for others to conceptualize what living with an invisible disability is like, while also making it real, personal, and engaging for them.
Fibromyalgia patient leader Kristal says: “Provide stats for education as well as your personal experience to paint the picture of what life is really like.” Using facts and quantifiable information helps to support the points you’re making, and shows you’ve done your research, while including your personal experiences establishes your credibility. Simply put, using both logic and emotion to explain your invisible disability to others will help your audience better understand your experiences, and create a more engaging learning moment.
2. Remember That You Know Your Body Best
As a patient leader, you’ve likely learned several coping strategies and tactics to make managing your health easier on a daily basis. By ajusting to a new normal, you’ve learned what works best for you, what drains your energy or energizes you, and what tests your limits. Still, even though it’s often done with good intentions, friends, family, and even strangers are often inclined to suggest things that may actually be unhelpful or inaccessible.
For instance, they may suggest a high-energy activity in an attempt to be inclusive without realizing that fatigue or joint pain makes it difficult for you to be active for long periods of time.
It’s likely that you’ve also had to deal with unhelpful comments like “you don’t look sick” or “my friend who had a chronic illness was cured with essential oils.” These comments are frustrating, but also illustrate why the work of patient leaders, like you, is so important and essential for educating the general public.
When advocating for yourself in social situations, be clear and transparent. As CLL patient leader Michele says “Express your needs & don’t take it personally if someone isn’t capable of meeting those needs. Do what’s best for you.” Unfortunately, these conversations can be difficult and your boundaries may not always be respected. Breast cancer patient leader Susan eloquently states “If someone doesn’t understand, it’s a reflection of them and not you. Don’t take it personally if someone doesn’t respect your experience/needs/etc.” As both Michele and Susan have said, the failure of others to respect the choices you’re making for your health is not your own failure. At the end of the day, self-advocacy is making the choices and setting the boundaries that work best for you personally.
3. Clear up Misconceptions by Sharing Your Experiences Candidly
If individuals in your life are expressing interest in learning more about your invisible disability, that can be a great opportunity to crush misinformation and raise awareness for your condition.
One of the biggest misconceptions to clarify is that a chronic health condition is a short-term issue. As sickle cell patient leader Elle says “People struggle to realize that things may not go back to when there was no diagnosis.” It’s a struggle for others to adjust their expectations on such a broad level.
Multiple sclerosis patient leader Jenna strives to educate others on her new reality by being candid with those around her. She says: “I set a clear boundary that ‘This is what I’m doing.’ I tell them please know that I am doing the best I can at the moment. My abilities change from day to day, but really moment to moment. I make it clear that I can’t always do what I want, and sometimes I have to do what I need. I ask them kindly not to question my choices, but also know that if I’m not doing something, there’s a reason.”
4. Pick Your Advocacy Battles Wisely
When you live with an invisible disability your time is precious, and with all of the medical appointments, your privacy can be too. Your physical and mental health should always come first. Remember that how you share your story, who you share your patient journey with, and when you share it is entirely up to you.
When diabetes patient leader Phyllissa receives unwanted information or suggestions, she responds in a polite but assertive manner, she says: “I just say ‘thank you so much for that information’ because I’m not interested in the fight, and it saves my peace of mind.” Endometriosis patient leader Lauren has a similar strategy for dealing with unwanted conversations and requests that she’s not comfortable with, sharing, “I don’t explain myself. If it’s not accessible, it’s a flat out no.” Remember, speaking up for yourself is self-advocacy. Saying no is a powerful tool for protecting your energy, peace of mind, and privacy.
Tips for Self Advocacy
The ability to advocate for yourself in medical settings is a crucial skill for any patient leader. It takes practice to learn how to communicate effectively with your care team and to establish a rapport. As Elle says, “Relationship building is key.” The patient-doctor relationship is at the heart of a patient treatment’s experience, and trust is key for both parties. Our Patient Leader network suggested several different tips that can help patients get the most from their care team, and make self-advocacy easier.
5. Take Notes to Document Your Patient Journey
It never hurts to come prepared to a doctor’s appointment or to a meeting with a medical professional. One of the easiest ways to show that you’re invested in your care, and to ensure that your concerns are addressed is to take notes.
Patient leader Lauren suggests journaling, and even taking photos to document your concerns and to have “evidence” to support them. She says, “Journal about what you’re going through on a daily basis (i.e. symptoms). It can help you explain the full picture to your doctor who may not believe you. Think of it as research on yourself because everyone’s experience is unique and doesn’t always fit the textbook diagnosis.”
Nowadays, note-taking is more accessible than ever with feature-rich digital options, as well as the traditional pen and paper approach. As an added bonus, logging your symptoms and other aspects of your quality of life can help you predict, avoid, and cope with flares.
6. Learn From Every Appointment, and Remember That It’s a Process
It’s okay if advocating at the doctor doesn’t come easily.
Medical settings are often overwhelming. Generally, you have a limited amount of time with your healthcare provider, and explaining your entire patient experience in a short session is never easy.
Thankfully, navigating healthcare and speaking to doctors is a skill that you can sharpen with practice. As patient leader Angelica says, “It is a process of learning how to stand up for myself and be the person they listen to.”
If you’re new to navigating an invisible disability, remember that you don’t have to tackle everything on your own. As Susan says “bring someone with you who can be a support and ally/advocate on your behalf.” A trusted family member or friend can help keep appointments from being too overwhelming, and allow you to focus on the most important aspects of your visit by taking care of smaller tasks.
7. Ask for What You Need
At the doctor’s office, it’s key to assert what you’re looking to achieve from the visit. As patient leader Sarahjayne says “I won’t back down if I need something. I do my research, then I go to my doctor with what I think it is, and then she will look into it.” Your doctor should accommodate your questions, concerns, and requests.
Patient leader Erin also shares: “Not every doctor is trained in your condition. Don’t take every doctor’s advice – you may actually know better.” Don’t be afraid to ask questions and follow up with a different doctor to ensure you’re getting the best care possible. Plus, it never hurts to get a second opinion.
8. Remember That Your Doctor Is Working for You
It can be easy to feel like you’re out of your depth when you’re in a doctor’s office, but it’s important to remember that your doctor works for you. As patient leader Susan says, “Believe it or not, you can ‘fire’ your doctor. You’re paying for the service, and if they don’t serve you, you deserve better.”
The doctor-patient relationship is a two-way street. A healthy relationship between a patient and their care team is an open dialogue and conversation, rather than a monologue from either side. Patient leader Julie makes it personal for her doctor by asking him to consider things from the perspective of his patients, and those close to him. She says, “I always ask them to stop and ask if this is the treatment they would give to their mother, daughter, or wife.”
If your doctor is not listening, taking you seriously, or even if they simply aren’t the best fit for you, it is valid for you to seek out a different care team.
Advocating For Others
As a patient leader, you’re on a mission to transform healthcare, and advocating for other patients is a huge part of that. No matter what form your advocacy takes, you’re making an impact with your dedication and compassion for the community. Collaborating with and learning from other patient leaders can take your advocacy to the next level, and elevate your initiatives.
Our Patient Leader Network shared a couple of actionable ways you can advocate for the invisible disabilities community. From partnering with other thought leaders and healthcare stakeholders to make healthcare more accessible to educating others on resources to make managing an invisible disability easier, these tips will fit perfectly into your advocacy toolkit.
9. Collaborate With the Community
The invisible disabilities community is stronger together! As patient leader Kristal says, to advance advocacy, patients should “break the silo and work cross-collaboratively between patient communities. You may have discussions with others who have different medical conditions, but have similar experiences.”
A diversity of experiences shows just how encompassing invisible disabilities can be, and how inaccessible our society actually is. Plus, more voices mean more insights and opportunities for everyone. By working together, patients can shape the healthcare industry and landscape. Patient leader Gerry shares “partnering with pharma companies and bigger healthcare organizations to share the patient point of view” as a form of advocacy. Here at WEGO, we strongly believe collaboration is the key to advancing the patient voice. That’s why we’re always finding partnerships for the Patient Leader Network!
10.Small Acts of Advocacy Add Up
Not all advocacy has to be large scale, and massive. Advocacy can also be personal and individual. Remember, your relationships are a form of advocacy too! Whether you’re asking how best to support those with a disability, or empowering them to speak their needs – there’s plenty of ways to support the invisible disabilities community.
Patient leader Susan advocates by “letting others know what their rights are or ways they can find accessible solutions/receive accommodations.” By sharing these resources, you’re bringing the needs and rights of the disability community to the forefront. One resource that Jenna recommends is Chronically Capable, a website that connects job-seekers to accessible employment opportunities. If you’re looking for resources, a great way to find new avenues and opportunities is to speak with fellow patients across conditions. Like Lauren says, “Talk to those in your patient community. Not every symptom is listed in a textbook and it’s helpful to know if others are experiencing the same thing.”
We challenge you to expand your understanding of invisible disabilities by following the 30 patient leaders who contributed to this resource. By following their stories, and supporting their efforts, we can make this world a better, more accessible place.
Thank you to the following patient leaders for offering their experiences, insights, and advice:
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