Self-Advocacy in Healthcare

The ability to advocate for yourself is not something you are born with or you’ve genetically inherited. It is a learned skill. The need for self-advocacy often arises when perceived confidence is replaced by exhaustion. There are only so many times you can be gaslit, dismissed or receive ineffective care before the healthcare system wears you down. This is usually when you become your own advocate or choose to partner with someone who can help you advocate for what you medically need.

What is Advocacy?

Being your own advocate means taking an active, informed role in your medical decisions. It involves speaking up for your needs, asking informed questions, and understanding your rights. It also means working collaboratively with your health professional(s) as partners in your health journey.

What Advocacy is NOT

Advocacy is not about being confrontational and allowing your emotions to take the lead in conversations. It is about finding the right language and phraseology that elicits a positive flow of information that leads to effective health directives and planning for diagnosis and treatment options. Advocacy creates clear and concise communication that allows the sharing of experiences and needs for proper treatment(s).

Advocacy is not seeking validation for your symptoms. Your feelings and symptoms are very real. It is important to note how long you have had these symptoms and how many times you have been invalidated. Doctors need to use your listed symptoms as part of the testing and diagnosis process. They also need to properly evaluate your symptoms to determine they are part of a new legitimate condition or disease and not lump your symptoms into an existing condition or disease. This is known as diagnostic overshadowing and is a common problem with chronically ill patients.

Why is Advocacy Important?

There are three important concepts you need to accept in advocacy:

• The western healthcare system is broken
• Western medicine is not the only health resource available to you
• You are ultimately responsible for your own health – both your physical and mental health

Learning more about your condition(s) and being able to clearly communicate your needs, questions and desired outcomes is necessary to move your health forward. Many times people lack the confidence and self-trust to initiate or guide these conversations. This tends to leave people leaving the doctor’s office with more unanswered questions and no proper resolution or next steps than when they entered the appointment or situation.

The Dangers of NOT Advocating

Self-advocacy or assisted advocacy is essential in ensuring your questions get answered, options are explored, and treatment paths are defined. Without adequate advocacy you may spend weeks, months or even years trying to get tests, a diagnosis and treatment for your condition by health professionals. This will lead to ultimate frustration and exhaustion going round and round with no improvement in your condition(s) and may even cause you to stop seeking treatment altogether.

Another danger you can face may be the assignment of a mental health condition, such as depression or anxiety, that results in an erroneous diagnosis and treatment with unnecessary medications. Anxiety, depression and mood changes are symptoms of many conditions and diseases. You need to make sure your doctor properly assesses ALL conditions with these symptoms with a mental health diagnosis* being a diagnosis of exclusion.

*Note: anxiety, depression and other psychiatric conditions can be “situational” and not “clinical.” This means these feelings are temporary and associated with the immediate issues currently happening. Eventually they will dissipate or resolve when the problem or issue is resolved.

Can Someone Advocate for Me?

Yes. Some hospitals and larger healthcare organizations have advocates or ombudsman who can assist you in navigating your healthcare needs. While this is an option, you need to consider if they adequately understand my condition(s), how it affects me and the care required to manage it. This is particularly true with those struggling with lipedema and any of its co-occurring conditions.

You may decide to choose someone closer to you that sees and understands your daily struggles. This could include your spouse, adult children or close friends. Unless they have your same condition(s) they do not fully understand the pain, self care and limitations you face on a daily basis. However, they can attest to fluctuating pain levels, struggles with compression, mobility limitations, and the inability to do things you once were able to achieve.

While others can advocate for or with you, it is best for you to gain the confidence, self-trust and skills to advocate for yourself. You know best what works and doesn’t work, what you’ve tried and what may still be options not yet explored. The following sections were developed to help you learn those skills.

How do I Become an Advocate for Myself?

The emotional stress of being unprepared for an appointment or situation tends to place the brain into protective mode and does not allow for clarity of productive conversation. Patients who adequately prepare questions, bring supporting material and express their expectations tend to communicate clearer and thus achieve better meeting results.

While learning to be your own advocate is necessary, it can feel uncomfortable and disconcerting for a bit until you “find your voice.” You may also tend to backslide into old habits and doubt your advocacy skills. This is normal and a good sign of growth in this area. If necessary and available, bring someone who can support you with your advocacy needs.

Setting Boundaries

Setting boundaries are necessary to define what you will and will not accept during visits and conversations with your medical professional. Once you develop good boundaries, confidence in your skills and self-trust, you may find advocacy to be quite fulfilling and even exhilarating.

An example of setting boundaries can include refraining from taking weight measurements at every visit. There are times weight measurements are necessary, including surgery considerations and use of imaging machines. Many people may find routine requests for weight measurements to be triggering, eliciting unnecessary anxiety. Express this boundary to your health team and politely ask them to refrain references and requests for weight measurements unless initiated by you.

Another example of setting boundaries could include references and discussions about diets. Ask your health team to avoid discussions on what diet they think you should follow and why it may have worked for them. They do not share your conditions and unique needs. You may already be following the best eating plan for your condition(s). Inform them you will ask for nutrition advice when appropriate, especially when discussing nutritional deficiencies.

Your Health Team Should Be A Partner in Your Health

Being an advocate, setting boundaries and finding your voice also means not accepting being gaslit or dismissed. If you encounter a health professional who chooses not to learn about your condition(s) or move your treatment forward, move on to a new health professional. You need someone who takes your symptoms seriously, gives you a proper diagnosis, runs the appropriate labs, and prescribes effective treatment, Your health is a journey and you deserve someone who is just as committed to providing what you need to thrive and raise your quality of life. If not, don’t be afraid to walk out the door until you find the right health professional.

Where Else Can I Learn Advocacy Skills?

You can always Google for some information. However, if you are looking specifically for advocacy with lipedema, lymphedema and other co-occurring conditions, then you will want to join a group of supporting women with the same conditions. They can share their journey, their struggles and victories, and how they found their voice.

Advocacy Tips

There are definitely some tools and techniques you can learn and employ to be a better self-advocate. The following list defines actions you can take to increase your knowledge and advocacy skills. The deliverables section defines the outcomes of invoking the mentioned actions.

Action	Deliverable
Learn what you can about your condition(s) to be medically conversant.	When you show confidence and knowledge about your condition(s) you demonstrate you’re ready to outline levels of care and treatment. Sometimes you may find you know more than your medical professional and can therefore work better collaboratively on defining next steps in your treatment path.
Bring supporting documentation and explain how it applies to you.	This demonstrates you are knowledgeable and taking an active interest in new or acceptable standards of care for your condition.
Develop a written list of questions to be answered.	Writing down the questions reinforces your conversation and avoids forgetting important information you need addressed. The list can include asking about familiarity with lipedema, its diagnosis and treatment recommendations.
Develop a written list of testing and treatment options desired and why you feel they are important.	Writing down the questions helps create talking points and explore what options are available to you along with your expectations.
Learn “prepared” language that helps you effectively communicate with your health professional.	Learning “prepared” language creates more precise conversation, defines your expectation and how to guide the communication when it becomes ambiguous, dismissive or challenging for the health professional.
Learn to recognize any biases and prejudices and how to counter them.	Recognize when your health professional is using a bias against you by erroneously assigning your symptoms to obesity, disability, being elderly, etc. and respectively counter with looking at these symptoms as part of a new condition(s).

What if Advocacy is Not Enough?

If you feel you have asked for reasonable testing, assessment, diagnosis and treatment options using the tools above, be prepared to move on to another provider who is willing to be engaging with you. Not every provider will be a good fit for your needs, so you need to be prepared to find a better fit for your needs.

If your doctor is not being engaging and asking questions about your symptoms, what you are currently doing for treatment and care options, and what concerns you have moving forward with new care options, it may be time to consider a new provider.

Another avenue you can pursue is to find a Certified Lymphedema Therapist (CLT) and ask for a doctor recommendation who can diagnose and order treatment for your condition(s). Sometimes working in reverse can help you find a qualified doctor.

Setting Up Scripts

Scripts are not meant to be verbatim items to say during a visit or encounter, rather using “prepared” language and action items to ensure you get what you need. Once you learn how to use them you will find your communication becoming more focused and defined with actionable steps and options for next steps when the path seems unclear.

Symptoms Focus	Impact Focus
These symptoms are terrible and make me feel awful throughout the day.	The symptoms produce steady level 5-7 pain most of the day preventing me from going to work, doing most housework, too fatigued to leave the house.  I have to find family and friends to help pick up my kids and do basic tasks around the house.
My legs are in a lot of pain and it is difficult to move around.	The pressure pain and swelling in both legs, thighs and hips forces me to elevate my legs most of the day.  My mobility is severely limited to walking only around my house and I need to use chairs in all rooms to sit after walking more than 20 feet and when cooking.
I have been tracking my symptoms for X amount of time and noticed the following patterns and conditions when flares occur. (Provide a list for review.)	Identifying specific symptoms, the frequency of their occurrence, the severity of any pain involved and any triggers will help narrow down the associated condition or disease.
Are there other tests or conditions we should do?	I am concerned we may be overlooking other possible conditions as my symptoms are indicative of other common diseases.  I would like to run additional tests to rule out some key conditions, especially as they are present in some family members.
I cannot walk very well.	I need extra time moving around the hospital or doctor’s office as my legs cannot walk far or long.  Can we add some extra time to our visit to accommodate extra mobility time?
My size and medical condition cause problems using imaging equipment and exam tables.	I need assistance stepping up to the exam table or perhaps you can use a lower table to accommodate my size and medical condition?  Can I sit while performing a mammogram as I cannot stand and maneuver with my condition?
The medication you gave me is making me sick.	The medication you prescribed is producing the following symptoms (provide a list) within X minutes of taking it.  Would I be able to try another comparable medication?

Self-Advocacy in Healthcare Summary

Self-advocacy is a learned skill that is necessary in effectively communicating with medical staff. It can turn fear, anxiety, frustration, anger, and exhaustion into the control and manageability needed to ensure you get the care you need and deserve. Self-advocacy gives you the confidence and self-trust to ask the right questions, request the right tests, insist on a correct diagnosis and define your expectations of treatment.

You have a legitimate condition(s) and deserve an accurate diagnosis and effective treatment plan. Question new symptoms and discuss any changes needed in treatments when the current plan does not appear to be working. Learn medical phraseology and how to effectively communicate with your medical team on terms they understand. Reviewing scripts and advocacy tips are a good way to get started on developing your communication strategy and moving your health forward.

Do not allow anyone to invalidate your feelings, symptoms and attempts at treatment. Your health journey should be a collaborative effort and you need a team dedicated to walking the path with you. If you repeatedly get gaslit, dismissed or receive ineffective treatment do NOT be afraid to walk away and find a team who is willing to take your journey. You must take control of your health and guide the process to find the best solution possible. You deserve the best quality of life possible and self-advocacy is an essential tool to achieve that goal.

To Your Improved Health!!

Resources:

• Lipedema Foundation – Patient Advocacy Guide
• SoulTrek Counseling and Consulting – Medical Self-Advocacy Scripts