{"id":36243,"date":"2024-02-12T18:22:15","date_gmt":"2024-02-12T16:22:15","guid":{"rendered":"https:\/\/www.ipsen.com\/us\/?p=36243"},"modified":"2024-02-12T18:22:51","modified_gmt":"2024-02-12T16:22:51","slug":"advocating-for-yourself-l-maries-experience-with-pbc","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/us\/improving-lives\/advocating-for-yourself-l-maries-experience-with-pbc\/","title":{"rendered":"Advocating for Yourself: L. Marie\u2019s Experience with PBC"},"content":{"rendered":"\n

L. Marie started her career more than 20 years ago helping others access community health programs and healthcare\u2014a skillset she never imagined would eventually be put to use advocating for her own health after being dismissed by her doctors. \u00a0<\/em><\/p>\n\n\n\n

It was January 2019 when L. Marie first sensed that something was wrong. She felt much more tired than normal, but chalked it up to the weather\u2014thinking that the cold, dark winter days in Chicago were responsible for her feeling of being rundown.  <\/p>\n\n\n\n

\u201cAs women, we can explain away anything,\u201d says L. Marie. \u201cIt took me a while to come to terms that there was something going on and that I needed to start looking for answers.\u201d<\/p>\n\n\n\n

When she visited her doctor, she was frustrated that her symptoms were discounted, even after her blood work came back irregular.<\/p>\n\n\n\n

\u201cHow active are you?\u201d \u201cWhat\u2019s your diet like?\u201d were the questions her primary care physician asked, dismissing the serious fatigue L. Marie had been experiencing for weeks.<\/p>\n\n\n\n

\u201cAs givers and caretakers\u2014at home and at work\u2014women give so much, but this was a moment in my life when I finally said, \u2018wait a minute, I need to focus on me right now.\u2019\u201d<\/p>\n\n\n\n

The fatigue persisted, but so did L. Marie. After pressing her doctor to run more tests, they noticed that she had elevated alkaline phosphatase (ALP) levels which can indicate liver disease or certain bone disorders.1<\/sup> But an MRI and bone scan confirmed that her bones were strong, and she knew she needed to find out more about liver diseases. \u00a0<\/p>\n\n\n\n

Luckily, L. Marie\u2019s health insurance didn\u2019t require a referral to see a specialist and after doing some research on her own, she made an appointment with a hepatologist. Given her career, she knew how to navigate the healthcare system and within a week, L. Marie was finally in front of a specialist who would be able to give her answers. The diagnosis was primary biliary cholangitis (PBC), which was later confirmed with a liver biopsy, and validated what she had known from the beginning: something was not right.<\/p>\n\n\n\n

PBC is a rare, progressive autoimmune cholestatic liver disease in which bile ducts in the liver are gradually destroyed and can inhibit the liver\u2019s ability to rid the body of toxins.2<\/sup> It is also a disease that predominantly affects women.3<\/sup><\/p>\n\n\n\n

Accepting and Giving Support  <\/strong><\/p>\n\n\n\n

\u201cWhen you\u2019re first diagnosed, you\u2019re thirsty for knowledge,\u201d recalls L. Marie. Unfortunately, she didn\u2019t get support resources from the doctor who diagnosed her \u2013 she was instead told to do her own research.  She took a proactive approach and reached out to the American Liver Foundation<\/a> who connected her with a local PBC group.<\/p>\n\n\n\n

\u201cThere are two dates you remember,\u201d L. Marie reflects on her experience. \u201cThe day you were diagnosed and the day you met another person living with PBC. The better day is meeting someone else with PBC because you realize you\u2019re not alone. People living with PBC are all different, and come from different walks of life, different generations, but there is something underneath that links us together\u2014it\u2019s like a sisterhood.\u201d<\/p>\n\n\n\n

While L.  Marie still finds support among her close friends and family, she takes comfort in knowing she\u2019s not alone. That there are others who are living with PBC and who understand what it\u2019s like to navigate an \u201cinvisible\u201d disease and the challenges that come with it.  <\/p>\n\n\n\n

The Credibility Gap<\/strong><\/p>\n\n\n\n

L. Marie\u2019s story, like so many others, reflects the inherent bias in our healthcare system, especially the inequity that exists for women\u2019s health.<\/p>\n\n\n\n

Research shows that women and racial and ethnic minorities are up to 30 percent more likely to be misdiagnosed than white men.4<\/sup> Women\u2019s health concerns are often chalked up to \u201cdaily life\u201d as a caretaker for their family or can be blamed on mental health, weight or lack of diet and exercise. These generalizations not only are dismissive to potential underlying conditions, which can lead to delays in diagnosis and effective treatment, but create a dynamic where someone may not bring up the realities of how they are feeling or even fuel stigmas that exist.<\/p>\n\n\n\n

For people with PBC, studies have indicated that because some of the symptoms\u2014like itching and fatigue\u2014are \u201cinvisible\u201d there is a fear of being viewed as complaining about the burden or impact of disease on daily life.5<\/sup><\/p>\n\n\n\n

Moving Forward<\/strong><\/p>\n\n\n\n

For L. Marie, she has become the CEO of her own health. She speaks about her experience in hopes of empowering others to do the same. In many ways, she approaches this facet of her life like she does her career.  <\/p>\n\n\n\n

\u201cThis condition isn\u2019t going away,\u201d says L. Marie. \u201cI need to know how I can educate myself and plan for the future while helping others do the same.\u201d<\/p>\n\n\n\n

Thankfully, L. Marie was diagnosed with PBC early with her self-advocacy, but there are many others who are not. She hopes that others will have the courage and feel empowered to not give up when advocating for themselves with their healthcare provider and when necessary, to break down the barriers that exist within our healthcare system.<\/p>\n\n\n\n

For women who may feel overlooked or ignored by the health system, L. Marie encourages you to \u201cbe unwavering in your commitment to advocate for yourself. You know your body best and you deserve answers.\u201d<\/p>\n\n\n\n \n

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