Thursday, June 2, 2016

Lipedema, Part 8: Living Your Best Life

"Lipoedema does not define us. It's the disease we share."
Image from Lipoedema Australia Support Society
Last year I did a series on lipedema (also spelled lipoedema), sometimes known as "painful fat syndrome" or "big leg syndrome." June is Lipedema Awareness Month so it's time to add to the series.

In lipedema, a fat storage disorder, an abnormal accumulation of fat occurs in the legs and lower body, sometimes including the arms as well. Here is what we have covered so far:
Today, we talk about the emotional and social impact of lipedema, and how important it is to overcome these challenges and live our best possible lives despite lipedema. 

I'd love to hear other women share how they are living their best possible lives despite the challenges of lipedema. And if you have other lipedema-related topics to suggest for future posts, please put them in the comments section.

Emotional and Social Impact of Lipedema 

Lipedema is definitely a challenge both physically and emotionally. It's hard for people without lipedema to understand just how burdensome lipedema can be.

Physical Burden

It's hard to have such a large body and there is definitely a physical burden to it, especially as we age. It takes a lot of energy to move around a very big body, and that can be tiring.

By the time we hit middle age, many of us with lipedema have developed significant joint issues. This is not just from the extra weight itself but also because lipedema predisposes to joint issues. Many people with lipedema have concurrent Ehlers-Danlos Syndrome, Hypermobility Type, a connective tissue disorder that leads to loose ligaments and joint instability. In addition, lipedema predisposes to leakage of fluids into the joints, which irritates them and can predispose to arthritis. Lipedema also causes gait alterations, which in turn causes arthritis and other joint issues.

Beyond just the physical burden of moving around a larger body, lipedema can be quite painful. Even light touches to the legs hurt, sometimes badly. In addition, many with lipedema suffer a deep aching and exhaustion in their legs that is hard to describe to others. In the later stages, some people feel like they've run a marathon, just from standing for a little while or after a short walk. Often there is a significant amount of daily pain and fatigue that must be endured, and anyone who has dealt with chronic pain and fatigue knows how burdensome that can be.

Those who develop severe lipo-lymphedema have a particularly difficult burden. Swelling of the legs, hips, and arms can become extreme. In that situation, it is very difficult to find clothes that fit, and even the simplest mobility can become an issue. Sometimes the swelling (edema) can become so bad that the excess fluid "weeps" out of the legs because the body can no longer dispose of it properly. The lack of efficient lymph circulation predisposes to secondary infections in the legs, and cellulitis and erysipelas infections can become life-threatening if not caught in time or treated adequately.

Bottom line, lipedema is a TREMENDOUS physical burden, and not just from the extra weight. The condition itself, regardless of size, can cause great hardship. 

Emotional Burden

Most people would recognize that lipedema can be a major physical burden in its later stages. What many don't appreciate is how significant an emotional burden lipedema can carry.

It's never easy to have a body that is outside the physical norm. People stare a lot at legs or arms that are so heavy, and it's easy to feel like a freak. Sometimes people can't look away from your legs or arms, or will only look at them instead of talking to your face. Or they sneak quick horrified looks, then determinedly try to focus elsewhere so they don't stare. Even when they try to be polite, their shock, morbid fascination, distaste, and judgment is clear. Because few have heard of lipedema, there's a lot of judgment about your weight and assumptions about your supposed eating habits. 

This can have a real impact on self-esteem. One woman describes it this way:

Coping with my shape, my size, my appearance, all have chipped away at my self confidence over the years, at my self esteem. I hate to see myself in the mirror – I joke with people about my condition, it’s my way of coping, I talk about my ‘tree trunks’ and my built-in ‘sumo suit’, but I don’t find it funny and when I’m on my own I’m not laughing. I don’t like people to see me low, so when I feel low I end up crying on my own. On a bad day I feel that it’s a life sentence I’ve been given.
It's difficult to be larger than average in a looks-obsessed society. Add to that how judgmental friends, family, and doctors believe you about your size and lipedema can be a very difficult thing to deal with emotionally. 

Social and Medical Stigma

People with lipedema face near-universal pressure to lose weight from those around them. They constantly battle their weight, making very little headway against it while constantly being judged by others about what they are eating and whether they are "doing enough." They are often not believed about their intakes, or are expected to strictly adhere to extremely restrictive regimens. This is not a realistic or humane way to live. As another woman shares:
In spite of all the dieting, exercising, massaging and fat-pummelling, the only thing that ever shrunk was my self-esteem, and all I got for my efforts was an eating disorder.
Emotionally and socially, it is very difficult to have lipedema in a disbelieving society. Here is a video that portrays the journey towards diagnosis for many people with lipedema (or as they spell it in Australia, where the film is from, lipoedema).

Unfortunately, no narrative of how hard you've tried to lose weight will ever convince some people that it's not your fault. As a result, there can be a great deal of social stigma for a person with lipedema. Any mobility issues are seen as a logical consequence of "bad habits" and there is little sympathy (and often great mockery) if mobility aids like scooters are needed in the later stages of lipedema. A fat person on a scooter is the ultimate target of disdain for many.

Sadly, in lipedema patients, weight and the mobility issues often combine to create a brutal intersectionality of weight stigma and disability stigma.

Yet many people with lipedema are denied access to treatments that might help them, like lymph-sparing liposuction or knee replacement surgery. Instead, doctors berate us for a condition we cannot help, prescribe the same treatment (weight loss) that has failed over and over, and keep us from the few treatments that might actually help.

Even when we can access these treatments, we often must pay for these things out of our own pockets, because lipedema is not recognized by many insurance companies. This puts them out of reach of many. And because lipedema can be a significant physical challenge in later stages, full-time employment may be difficult, making it even more difficult to afford treatment.

Dealing with Lipedema

There's no question about it, lipedema sucks. Big time.

It's a burdensome disease, physically, emotionally, and socially, yet our burden is added to because few people believe us that lipedema is a real condition. Even when presented with legitimate medical information about lipedema, many call us liars or insist that we are just in denial about our "obesity." 

With so many challenges, it can be easy to get swept up into anger, resentment, and depression over it. As one blogger writes:
Living with lipedema, as with the management of any chronic condition, presents physical, mental, and emotional challenges. 
Physically, my arms and legs are heavy and extremely sensitive, the excess weight causes pressure and pain in my joints and tires me out very easily. 
Mentally, I struggle with the reality of having a progressive condition [for] which little is known, and [for] which few effective treatment options exist and are not readily accessible or require insurance appeals to get covered. 
Emotionally, I live in fear of when my next bought of cellulitis will occur. I am judged and stereotyped based on my appearance. I have been discriminated against in the workplace, and been denied proper medical treatment because of weight bias and stigma. 
I often ask WHY ME?
The question of "why me?" is one that any person with a chronic illness asks. There is no good answer to this. Basically, life is unfair, and that the genetic lottery deals what the genetic lottery deals.

Lipedema is a rotten deal, but it's also true that there are many challenging conditions out there. Sometimes knowing that helps some women deal with the rotten parts of lipedema. 

Yet suffering is not a contest. The fact that someone else, somewhere, is suffering more than we are does not negate our own suffering. All we can do is acknowledge the difficulties that lipedema brings, let ourselves be justifiably angry over the unfairness of it all, but then move on with our lives so that we don't get stuck in anger and defeat.

Life brings everyone challenges; it's how you deal with the challenges that makes the most difference.

Sarah Bramblette is an American woman who has become one of the main ambassadors about living with lipedema. She has appeared on TV and in print talking about her experience with lipedema.You can read a summary of her journey with lipedema and lymphedema here [Trigger warning: mention of bariatric surgery and weight loss as part of her journey].

In another place, Sarah writes about the challenges of living with lipedema, yet not letting it control your happiness. She writes:
While the prospect of having a condition to which I have little control is daunting, I do at least have the knowledge of why I am not able to lose weight normally. Long ago I made the decision to move forward with life, gather up my fight and go full speed ahead. I might not know where I am going, or how my lipedema will progress, but nothing is going to deter me from being me or living my life to the fullest. I had never let my weight hold me back, and I am surely not going to let lipedema, despite the challenges, keep me from living the life I want to live.

Image from Lipoedema Australia Support Society
Lipedema is a condition in which the fat cells in the body (especially the lower body) are subject to overproduction and overgrowth. In some ways, it's analogous to acromegaly, a condition in which a benign tumor causes the pituitary gland to overproduce growth hormone, which then causes the body's skeletal and soft tissues to overgrow massively. We don't know what causes lipedema, but something causes the body's fat cells to respond abnormally and results in massive adipose tissue overgrowth.

Doctors readily believe that acromegaly is caused by a physical disorder, but sadly, rarely believe that the extra weight from lipedema is caused by a physical disorder. Because they have been trained to believe that obesity results only from sloth and gluttony, they regularly discount that there can be legitimate physical causes for it. Weight bias from society and from medical providers significantly adds to the burden of lipedema.

There is no question that lipedema can be a very challenging condition to live with. It is physically burdensome, but the emotional pain and stigma can be even more burdensome.

Medically, care providers often don't even believe the condition exists. Even when they do, it is challenging to get diagnosis or treatment because an International Classification of Disease (ICD) code for this condition doesn't even exist yet, despite the condition having been discovered 75 years ago. Far too often, women with lipedema are blamed and shamed for their condition and pressured to just lose weight.

There's no two ways about it - lipedema sucks. But like any other chronic illness, lipedema shouldn't be allowed to take away your joy in life.

You can't change the fact that you have lipedema, but you can change how you react to it.

You are the one who maintains control over your life and emotions, and although lipedema is challenging, you can still be happy with lipedema.

You can still have love, you can still have a family, you can still have meaningful work, you can still help others, and you can still find joyful things to do with the time you have on this earth. Many other women with lipedema before you have done so, and you can too.

Lipedema definitely sucks, there's no doubt about it, but we don't have to let it ruin our lives or keep us from happiness. Many women with lipedema live fulfilled and good lives. You can too.

Don't let a diagnosis of lipedema keep you from happiness.

References and Resources

Basic Info About Lipedema

*Trigger Warning: Some of these sites are not fat-friendly or promote dieting behaviors