Something that comes up often in the world of managing a chronic illness is how we navigate dealing with our healthcare providers. This is a deep and complicated topic, that could be neverending, but I want to touch on a very specific conversation that most of us had to have at some point in our journey with lipedema.

I asked a question in The Lipedema Journey Facebook group recently:  How did you first learn of lipedema?

Here are just a few of the responses to that question:
  • "Tik Tok"
  • "Instagram! Someone commented on one of my photos saying that my legs looked like hers and did I have Lipedema too. Which then sent me into a Google rabbit hole."
  • "A friend told me about another friend of hers that has it."
  • "A physical therapist after years of attending doctor with leg pain and heaviness. Then I had to tell my doctor what lipedema is"
  • "Friend had it. When she died, her husband reached out to me and told me she always wanted to talk to me. One of her dying wishes was that he had a discussion about it with me."
  • "I posted a picture of myself on another fb page and someone asked me if I have lipedema. I was so mad thinking how dare you ask me that. I googled it and found so many answers."
  • "Pinterest of all places! There were pictures of women who looked just like me. Then went down the proverbial rabbit hole of research, diagnosed by Dr Dean at OSU."
  • "It was 2012, i googled big ugly legs(sad but true) and found a page in German it had pictures and for the first time in my life I saw legs that looked like mine!!!! I’ll never forget that moment!"
  • "I began researching my symptoms after hearing people discuss their lymphedema in a support group for obesity Zoom call. I thought that many of my symptoms sounded like theirs. Through research, I discovered it is lipedema."
  • "Primary Care Physician"
  • "By becoming a certified lymphedema therapist. It was never mentioned when I was in OT school."
The theme that you’ll find in most conversations around how lipedema sufferers first learn about lipedema is that we usually figure it out by accident. Although some learn about it from a doctor, that is not the norm. I first learned of lipedema in a magazine article I was reading (coincidentally while sitting in the lobby of my doctor) about one of the contestants on The Biggest Loser television show by the name of Amanda Arlauskas. It was such a strange moment reading that article because I immediately recognized her legs and the symptoms she described. My journey officially began at that moment.

Once I started down the rabbit hole of researching lipedema, I realized that simply talking to my primary doctor about it may not be very helpful. As I joined a few lipedema support groups I saw women talking about their doctors completely discounting their suspicions and telling them lipedema wasn’t real and that they just needed to work harder to lose weight. To be honest, it took me a few months before I was ready to pursue a possible diagnosis because I did not want to have to deal with that type of response. I decided to find someone with experience diagnosing lipedema, which was no small feat. I finally found Dr. Dean at Ohio State University. He took about 30 seconds to diagnose me, and it felt so good to be affirmed by the doctor that my suspicions were correct.

Over the years since getting my diagnosis, I’ve heard so many painful stories about how women in our community have been treated by their healthcare providers. It makes me sad and so angry at the same time. It’s wrong on many levels, and should never happen.

How Do I Talk to My Healthcare Provider about Lipedema?

I suggest that you get yourself to a provider that is experienced with diagnosing lipedema if at all possible, but it can be very difficult to find. As a social worker who has worked in the medical setting and with many doctors over the years, I wanted to give you a few tips about approaching your healthcare providers about your suspicions that you have lipedema when you can’t get to a provider with lipedema experience.

If you would like to talk to your healthcare provider about a possible lipedema diagnosis, make an effort to let them know before your appointment. Many providers now have a way to communicate with them or their staff online. Reach out before your appointment to explain that you want to talk about this. Tell them you know that many healthcare providers know little to nothing about it. Pass along resources they can hopefully look at before the appointment. Here are a few that would be great to provide:
Fat Disorders Resource Society (They have some great brochures you can order from their website that are good to have on hand if you ever find yourself in a conversation about lipedema.)

Here’s a sample message or email that you can send your healthcare providers:

“Hi Dr. Smith,
I have scheduled an appointment to speak to you next week. I would like to discuss my suspicions that I have a medical condition called lipedema. I have learned that many healthcare providers know very little about it or have never even heard of it, so I wanted to reach out to you before my appointment so that you would have time to research it if needed. Here are some great resources of information: The Lipedema Standard of Care, Lipedema Foundation, and Fat Disorders Resource Society. This discussion is very important to me, so I hope that you’ll have time to look into this before our appointment. Here are the reasons that I believe that I may have lipedema:

  1. My bottom half has always been disproportionately larger than my top half.
  2. My legs are very tender to touch.
  3. When I’ve lost weight in the past, there is always very little change in my legs.
  4. I have ankle cuffing and a “column-like” appearance to my legs as described in lipedema.
  5. My legs get tired and very heavy all the time.
I appreciate you taking the time to look into this and look forward to our discussion next week.”

It’s always a good idea to let your healthcare providers know ahead of time that you want to talk about this. They are typically very busy and don’t have time to stop and do this research at any given moment. Your healthcare providers will be grateful that you gave them the information and the time to do their research before the appointment.

Now, of course, it’s possible they won’t get your message or have time or desire to do any research before your appointment. You may not have had a chance to give them the heads-up before your appointment.

When you bring up the topic, I highly suggest letting them know that you want to talk about a condition called lipedema. Let them know that you know that some providers don’t believe it’s real or have never heard of it. Tell them you have done your research and why you believe you could have it.

I’m Anxious about How They Will Respond

If you are worried about how your healthcare provider will respond to you, I recommend telling them at the beginning of the discussion.
You could tell them about some of the stories you’ve read about the way that people have been treated by their healthcare providers, which is causing you to be anxious. Most healthcare providers don’t want to be seen as that type of provider and will be more mindful of how they respond.

Again, come armed with as much information as possible…The Lipedema Standard of Care, the Lipedema Foundation brochure mentioned above, photographs, etc. You should have written down why you believe you may have lipedema, specifically noting your symptoms.
If they tell you they don’t know anything about lipedema, ask them to do some research.

If they are flippant, mean, cruel, etc., it’s time to start looking for another healthcare provider. I understand that’s easier said than done, but if it’s possible for you then do it. Your health is too important to stay with a healthcare provider that treats you poorly.

I hope this information is helpful. Just remember that it’s not your healthcare provider’s fault that they were not taught about lipedema in medical school. Arm them with information, allow them the opportunity to learn, and be honest about your feelings. Just as they have a responsibility to listen and be open to learning, we, as patients, have a responsibility to be honest and give them a chance to grow as humans and healers.

Bring an Advocate

It can be really helpful to bring someone with you to the appointment, especially someone you can trust to speak up and advocate for you. If you find it very difficult to advocate for yourself or you find yourself getting overwhelmed and flustered at appointments, having someone else there with you can ensure that you have the best opportunity to be heard and understood. Make sure they understand their role and what you want them to do to help you at the appointment.

How have these conversations gone for you in your journey? Please share your stories in the comments.

 
 
 

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