Endometriosis March Highlight: How to Advocate for Yourself in Healthcare

I don’t know about you, but I typically trust doctors and nurses implicitly.  That is, unless, I know that something is wrong with my body and they can’t explain it to me.  This seems to happen often with people who suffer from endometriosis.  It’s very important to fight for your right to get answers and adequate healthcare.  In this article, I will share some tips on how to respectfully advocate for yourself (or a loved one) in a healthcare setting.

Why does Lilypads think this is important?  Because people often dismiss women’s issues and period pains.  As individuals, we often consequently think pain is part of the deal when we have a uterus.  That’s not true.  The more of us who speak up, the better care we’ll all receive.  So, that’s why we’ve decided to write a self-advocacy article during Endometriosis March.

Before talking to a healthcare professional:

Document your symptoms

Write down your symptoms so you can show a healthcare professional.  It will ensure you don’t forget anything important.  If you make them a copy, they can also easily review and/or share it with a healthcare team.

What are your symptoms?

How long have you been experiencing them and how severe are they?

How often do they occur?

What helps to relieve them?

What seems to aggravate them?

Are you on any medications?

Do you have other health issues (current or past)?

Anything else that seems to be connected to your symptoms? Any other big life changes (loss of a job, newly married, recently moved, etc.)?

Educate yourself

  1. Do your own research on your symptoms!  You can’t diagnose yourself, but you may find helpful information.  Make sure to use peer-reviewed research platforms such as:
      1. UptoDate 
      2. PubMed
      3. NHS websites
      4. Mayo Hospital websites
      5. WHO websites
      6. Medical Journals
      7. Hit the books and look for recently published medical journals/books at the library

Connect with others

  1. If you’re comfortable, share with friends or family.  Chances are someone you know has some knowledge or experience with what you’re experiencing.  Even if you’ve never heard anyone talk about it before, that doesn’t mean you’re the only one.
    1. If you’re more comfortable with seeking support groups where you can be anonymous, please do.  Many platforms offer a place for a community of people who are looking for support.  Even if you’re not sure what is causing your symptoms, that’s ok too!  As long as you’re respectful in these groups, they can provide help and comfort.

During your appointment with a healthcare professional:

  1. Be respectful
    1. Mutual respect in this situation is vital.  You can still show respect while advocating for yourself.  However, if they are not being respectful to you, seek help elsewhere.
  1. Be heard
    1. Tell them about your symptoms as thoroughly as possible.
    2. Share the documents you have made tracking your symptoms.
    3. Answer any of their follow-up questions to the best of your ability.
      1. Even if they don’t seem relevant – trust me, doctors know what questions to ask to get the information they need for a correct diagnosis.
  1. Be noted:  accurate medical records
    1. Make sure they document your symptoms and the discussion in your medical records.
    2. This holds them responsible and will demonstrate in the future that you have been seeking help.

After your appointment:

  1. Satisfied with the treatment plan?
    1. Follow it!  Do the best you can to stick to this treatment plan.  Continue to track your symptoms.  This will determine if it’s helping or not.
  1. Not satisfied with the treatment plan?  
    1. Seek multiple opinions.  Ask for a referral to another healthcare professional.
    2. If they can’t offer a referral, then seek another healthcare professional on your own.
  1. Want more help?  
    1. Find a patient advocate.  There are individuals and organizations that offer patient advocate services.  This entails having a healthcare professional advocate on your behalf.  Search online to find a patient advocate in your healthcare system or an illness/disease-specific advocacy group.
    2. As we’re highlighting Endometriosis March this month, Endometriosis UK offers information and advocacy that can be a great help to anyone suffering from endometriosis.  Here is their link:  Endometriosis UK | the leading UK charity that supports women living with endometriosis (endometriosis-uk.org)

Remember, it’s a team effort to get the best healthcare.  Healthcare professionals need as much information from you as possible to make a good plan of action.  Equally, you need their support and knowledge to receive the best care possible.

You have the right to excellent healthcare.

Have any questions on how to advocate for yourself or a loved one in a healthcare setting?  

Do you have any advice on self-advocacy in healthcare?  

Are you willing to share a personal story about self-advocacy? 

Have you or do you know someone who’s needed to self-advocate due to having endometriosis?

If so, please share in the comments!

Written by Morgan Ludington

March 11, 2021

Edited by Lilypads

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