How to Stop Feeling Invisible and Alone in Your Health Journey

Inna Topiler Health Mysteries Solved Podcast

Dealing with the Loneliness and Frustration of Medical Dismissal

The Case: 

  • Meghan O’Rourke spent years describing her symptoms to her doctor only to be told it was something inconsequential or all in her head.
  • After years of feeling alone and abandoned by the system she started to see a functional medicine practitioner.
  • Finally, she was getting the real answers to what was going on but it took years to undo the damage done by dismissing the issues.
  • She wrote a book about her experience to help others feel less alone. 

The Investigation

Many people dealing with autoimmune diseases or rare genetic issues find themselves beyond the textbooks of traditional medicine. 

This can lead to being given false diagnosis (like, dry skin or hormonal shifts due to menses), or being sent off to specialist after specialist without any diagnosis. When you are caught in this loop, it seems like treating the issues is impossible and the journey can be emotionally draining. 

The most heartbreaking part is that women who find themselves in this situation start to question if there are any answers out there, if maybe it is all in their head, or if they will ever feel well again. 

This is often when they find me and I’m always so glad when they do and I can help to solve their health mysteries. I feel it’s my purpose to help them get out of despair and on the road to health.

The Invisible Kingdom

Meghan O’Rourke is on the same mission. In her book, The Invisible Kingdom, she shares her own journey and what it took to reclaim her health. She shares this story and everything she learned along the way so that others will know that they are not alone and that there are answers when you know where to look. 

The book is completely aligned with this podcast, so if you’re a long-time listener, you’ll understand why I had to have her on the show. 

In this episode, we break from our usual podcast format so that Meghan can share her inspirational story. 

Meghan’s Personal Health Mystery Story

For over 10 years, Meghan dealt with health issues that no doctor could explain. It started with neurological symptoms like when she started to feel electrical shock sensations run up her leg. The doctor told her it might be dry skin. Then she started to experience vertigo, fatigue, daily hives, brain fog, joint pain, and excessive night sweats. While certain symptoms were treated others were blamed on stress or she was told not to worry about them. 

Much like gaslighting, she started to question whether she was actually feeling these things. She started to buy into this message that something was wrong with her mind. She started to blame her diet and that everything she was experiencing was somehow her fault. 

Eventually, she was diagnosed with Lyme Disease. She was also diagnosed with a genetic condition as well as Hashimoto’s. This is when she realized that it wasn’t all in her head and started to understand the scope of suffering by those whose symptoms are dismissed.

Shifting Away from Conventional Medicine

Meghan’s medical struggles changed course when the sister of a friend (who is a nurse) suggested that she see a functional medicine doctor. The first thing they did was run labs that no conventional doctor had even considered. This was how the thyroid anomaly was found leading to a diagnosis of Hashimoto’s disease. 

Even though she was starting to get answers, it was difficult for her to let go of the belief that conventional doctors were the ultimate authority on health. Many people experience this because we are raised to trust traditional medicine and to be skeptical of alternatives.

But, the more she started to view her body as a whole system, the more she was able to understand the role the individual symptoms were playing in her overall health picture. She started to figure out the root causes of her symptoms.

Lyme Disease Diagnosis

Lyme disease had been the root cause of several of her symptoms. She’d had a number of strange rashes at different times but they weren’t classic bullseye rash known to indicate Lyme. She had dismissed Lyme as a possibility because of the lack of this tell-tale rash. It turns out that many people go undiagnosed for this same reason. The longer you have Lyme without treating it, the more damage it can do. 

Meghan was hesitant to treat her Lyme disease with antibiotics because she found that certain lifestyle choices significantly helped reduce her symptoms. However, this state of being “almost symptom-free” didn’t always last. Her functional doctor convinced her that the medication was necessary. Many people are surprised by this but the risks of Lyme going untreated are seen as far more harmful than the negative impact on your gut flora from taking antibiotics.

It took some time for the medication to work, but once it did, she was able to focus on repairing the damage the antibiotics may have done to her gut health. 

Fecal Microbiota Transplant

Fecal Microbiota Transplant is a cutting edge approach used to restore a severely-imbalanced gut. While this is still somewhat experimental, Meghan was willing to be a guinea pig. She’s glad she did it because in the end, she found it profoundly improved her health. 

But, it wasn’t a rosy path. Firstly, it’s an expensive treatment that is only covered (in the US) by insurance for treating C Difficile. The transplant (using a donor’s fecal microbiota) process took two weeks. They warned her that there might be an immune reaction and there was. She experienced flu-like symptoms and felt ill. They adjusted the treatment due to this reaction but felt confident that it was working. Two weeks later, Meghan reports that she felt a level of energy and good health that she hadn’t felt in 15 years. 

A Mindset of Resilience for Autoimmune Disease

One of the biggest lessons in Meghan’s book is the importance of mindset when you’re dealing with chronic illness and autoimmune diseases. She shares in her book coping mechanisms and a strategy for surviving it. The focus is so often on the physical challenges and we end up disregarding the mental and emotional challenges being faced. 

This can sometimes include a lack of trust in the medical system and even in what you’re feeling. 

Trust Your Intuition and Advocate for Yourself

One of the strategies Meghan talks about is trusting your intuition so you can be an advocate for your own health. She said it played an important role especially when she was feeling overwhelmed and getting mixed messages from the various experts. 

However, she points out that you want to avoid ‘search fatigue’ where you spend so much time researching, finding partial answers and getting frustrated. This can cause stress and sometimes you need to take a break. 

You also need to advocate for yourself outside of your treatment. You need care. You need access to better diagnostics. You need your job and for your bosses to support you and understand your disability. And, you need that social safety net and the promise of future treatment. And all of these needs can’t be met if you stay invisible in your struggles. So, you need to advocate for yourself. 

The Power of Tracking

One of the most important strategies for Meghan was to track everything. This gave her a clearer, objective picture than memory could and also helped her understand what was happening over time. 

She does this using spreadsheets where she puts her main symptoms and then rates them on a scale of 1-10 each day. She’ll also add a comment or too about how she’s feeling or activities that may have impacted her rating (like eating out or enjoying a glass of wine). It might sound like a lot of work, but once it is part of a routine, it doesn’t take that long and it provides a clear picture of health. 

Tracking can really help you make informed decisions about things that may shift the balance, like having that glass of wine, staying up a bit later, or eating out at a restaurant with friends. 

Finding Balance and Peace with Your Auto-immunity

One of the biggest challenges those dealing with autoimmunity face is the feeling that things will never get better. Meghan advises to consider that many of your restrictions or changes are temporary. Remember, you need to commit to it for a time but there will be a time beyond it. So, when you’re feeling isolated because you can’t go out to eat with friends, for example, remember that it’s a temporary situation. 

There will be times when you are triggered and times when you are feeling good. Everything is temporary, so don’t catastrophize, but do insist on the reality of what I’m experiencing. 

And remember, there are others dealing with what you’re dealing with. Meghan found that her online community was helpful because you are never alone. 

Eliminating Health Mysteries

For Meghan, the road was long but because she continued to dig, didn’t listen to those who told her to ignore her symptoms and she advocated for herself, she has regained her health. If this sounds familiar or there’s someone you know who is suffering from the isolation caused by conventional medical dismissal, please share this episode. 

Links:

Thanks to my guest Meghan O’Rourke. You can connect with her through her website, on Twitter and on Instagram. If you’d like to pick up her book, you can find it here

Related Podcast Episodes:

An Underlying Cause of Autoimmunity and Inflammation w/ Dr. Don Wood

Solving the Autoimmunity Mystery w/ Inna Topiler

The Case of the Unlikely Lyme Disease w/ Dr. Darin Ingels

Thanks for Listening

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PLEASE NOTE

All information, content, and material on this podcast is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider.

Some of the links provided are affiliate links. This means we may make a very small amount of money should you choose to buy after clicking on them. This will in no way affect the price of the product but it helps us a tiny bit in covering our expenses. 

Hi, I'm Inna!

I am obsessed with getting to the real root of health mysteries. Whether you are suffering from a major health issue like an autoimmune disease or have nagging and frustrating symptoms like fatigue, stomach discomfort, pain, insomnia, brain fog, PMS, skin issues, etc… they have a big impact on how you live your life. You don’t have to suffer. Together we can change that!