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The Phases of a Lipedema Diagnosis

Lipedema and Lymphedema Health Activist, Sarah talks about the different stages of being newly diagnosed! Check out Sarah’s article for her advice on living with a chronic illness. 

It has been a decade since I was diagnosed with lipedema. During that time I have learned a lot about the condition, about treatment options, and insurance coverage. More importantly, I have learned a lot about myself, about how to make myself a priority, how to advocate for my needs, and how to cope with living with a chronic condition.

Often the most difficult aspect of being diagnosed with lipedema is getting the official diagnosis. First identified in 1940 at the Mayo Clinic, lipedema is a congenital condition which causes the body to produce and accumulate abnormal amounts of adipose tissue in the legs, hips, thighs, and sometimes arms. Unlike normal fat, areas affected by lipedema cannot be reduced through restriction of calories or exercise. Considered a rare condition, the reality is lipedema affects 11% of women and is not rare, but rather under diagnosed. While an official diagnosis can often feel like a long awaited achievement, it is just the beginning of a life long journey of living and managing a chronic condition.

While I write these phases and tips in relation to my journey through diagnosis with lipedema, I believe they can be applied to the diagnosis of any chronic condition.

Confusion (Undiagnosed) – Typically begins with internet searches of “fat legs”, or “why can’t I lose weight in my legs”, discovering pictures that resemble your body type, reading descriptions of symptoms that sound like your experience: heavy painful legs, bruises, weight loss attempts that only affect upper body. You are certain you have lipedema, but unable to find a doctor with enough knowledge to make an actual diagnosis. This stage is full of frustration, which for many patient lasts years.

Navigation Tip: Advocate for yourself. Seek 2nd, 3rd, 4th opinions. Run from any doctor who tells you to just eat less and exercise more. Demand to have your concerns listened too. Print out lipedema information from the Internet (scholarly and research article are best) to take with you to doctor appointments. A challenge is lipedema is not covered by a specific medical specialty. Vascular doctors are often ones most likely knowledgeable, typically though listed as Lymphedema specialist.

Confirmation (Diagnosis) – The relief of having a diagnosis and ability to put a name on the condition and seek treatment options. Unfortunately, the feeling of relief is often short lived with the realization there is no cure for lipedema, just suggested treatments that can reduce pain and issues caused by inflammation. The reality of having a life-long potentially progressive medical condition is as difficult to handle as the physical aspects of the condition.

Navigation Tip: Build a support system. Seek professional mental health counseling. I would recommend this for anyone diagnosed with a chronic or major illness. Surround yourself with support of family and friends, this might be a time when you realize who is really able to support you when needed. Do not be angry at those who cannot, everyone has their own issues in life. Just focus on yourself and those to whom you can depend on. Find other lipedema patients to connect with.

Overwhelmed (Treatment) – Pumps, wraps, garments, surgery? Oh my! There is no standard of care for lipedema, the most common treatment recommendation is compression. Without a known cause of lipedema, there is no definitive treatment or cure. Finding the time, money, mental and emotional strength it takes to live with a chronic condition is very overwhelming. Treatment can be frustrating and painful at times. While beneficial, compression pumps require hours of lying in bed, while wraps can make mobility difficult. Figuring out insurance coverage is even more frustrating. There is a lot of trial and error involved in this phase as you seek relief from limited treatment options.

Navigation Tip: Slow down…breath. If you did not take the advice in Phase 2 to get counseling and establish a support system NOW is definitely the time to do so. Remember you do not have to try every treatment at once. It is actually better to try one treatment at a time so you know if you are getting relief from that treatment. If you have other medical conditions, be sure to keep all your doctors informed of any treatments you undergo. Remember everyone responds to treatment differently so do not base your treatment decision on others’ results. Keep in mind that overall health includes both physical and mental.

Balance (Management) – Finding the treatments that provide symptom relief and fit into daily life is very individualized to each patient. The ultimate goal should be to balance treatment with a good quality of life. However, once that balance is found, managing lipedema becomes a routine part of life. While an actual cure is what we all hope to have some day, for now balance is a relief that provide the ability to once again focus on other areas of life.

Navigation Tip: Be kind to yourself. There might be times when you become lax in your self-care and management, you will feel it and you will know you’re not doing what you need to do, but remember guilt will not help. Just try to get back into the habit of doing what you need to do to take care of yourself. No one is perfect, no one does 100% of what they need to do to in life.

It took me many years to move through the phases of diagnosis, treatment, and finally finding a balance in managing my lipedema and lymphedema and having a quality of life which I enjoy. Through my journey I developed a tenacity for advocating for my healthcare needs, I learned that I deserved to be treated with respect, I have a right to be informed of my treatment options and to be an active participant in my own care. I found my inner Health Activist, and decided to follow my passion to not only help myself but to help others. We as patients have to be the leaders of our healthcare teams. Our lives are at stake; if we don’t fight for it, who will? In a couple weeks, I will be leading a lunch with the experts session at the Obesity Action Coalition Your Weight Matters National Convention. Watch for my post-convention wrap up.

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Health Activist Bio 

Sarah Bramblette is a lipedema and lymphedema patient who combines her experiences as a patient and healthcare administrative professional in her advocacy efforts. She writes about her life experiences on her blog, born2lbfat.com and utilizes multiple social media platforms to spread awareness about her conditions and to advocate for improved diagnosis, treatment, and insurance coverage. She also advocates against weight bias and stigma, specifically in healthcare and the workplace.

She is a member of ObesityHelp.com, Obesity Action Coalition (OAC), National Lymphedema Network (NLN), and American Health Lawyers Association (AHLA). Her story has been shared on ObesityHelp.com and HealthCentral.com and in OAC Your Weight Matters Magazine, Psychology Today, and the Narrative Inquiry in Bioethics on Obesity. She recently hosted a WEGO Health Activist Twitter chat. In addition to her work as a patient advocate, Sarah is working towards a Masters in Health Law and will graduate in June 2015.

 

 

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