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On legs

Aimee Mullins has no legs below the knee and relies on prostheses. I have lipedema, which means my legs are big and painful.

Both of us can be defined as “disabled.” Yet Aimee is also an athlete, actress, and model, thanks to a wardrobe of prosthetic legs that allows her to decide how she will look and even how tall she will be on any given day.

If Aimee could choose, would she rather have my legs? Possibly not, and she has certainly made a full and interesting life for herself, earning her much well-deserved recognition.

If I could choose, would I rather have her legs? I will never be an athlete, walk down a fashion runway or be on a magazine cover.* So … maybe.

I can learn from Aimee and take part in the conversations she’s provoking about body image and ability. I can be inspired by the idea of turning a disability into something positive.

I also notice that her “sexy” legs wear high heels — the kind that, on real feet, end up causing pain and deformation over time. In my perfect world, it would be OK to go to the Oscars in flats.

*Actually, I was on a magazine cover, but it was a magazine put out by a local hospital promoting its lymphedema treatment services, and I was lying on a hospital bed in a rather inelegant pose.

2 Comments

  1. Dr Harriet FormanRN (http://www NULL.harrietsbookshelf NULL.com)

    Two comments – one (1) about a large majority of physicians and their woeful lack of knowledge about Lipedema and two (2) About the inadequacy and/or paradoxical effects of decongestive therapy. (1) MDs woeful lack of knowledge about Lipedema: Among the comments I have heard in response to my informing MDs that I have Lipedema are: “Never heard of it;”You mean Lymphedema:” and “You’re just fat!” (2) About inadequacy or and/or paradoxical effects of decongestive therapy: for some patients this treatment may be the correct course to follow while for others it may severely exacerbate pain, inflammation, extreme sensations of heat, and other discomfort. Practitioners treating Lipedema, and they are few and far-between – scoff at these reports and in some cases behave as though those reporting such effects are either prevaricating or fabricating. This adds to the distress and stress patients such as I and my friend KA has to endure. What we need is a national campaign to educate MDs and PTs about Lipedema and the differentiation of Lipedema from Lymphedema as the two are often confused.
    For those fellow sufferers who might be interested, I have found that compression – even socks and enclosed shoes and slippers are counter productive as is beef, dairy, and other inflammatory products. I take six Wobenzym nightly on an empty stomach and stay away from highly seasoned foods and wine. A dram of scotch now and then seems to be OK.
    Salud!

    Posted on 09-Jan-12 at 7:42 pm | Permalink
  2. Lipo Lady

    To add to your blog and the comments of Dr Forman I have Lipoedema in both legs and both arms and find the medical services totally disrespectful and lacking in interest or motivation regarding this condition. It is emotionally demanding & draining to constantly be dismissed and disbelieved.

    There is an appalling lack of respect for people with lipoedema which I tend to put down to the fact that it is bilateral and therefore too easy to dismiss as overweight. As we live in a society with no compassion for those who struggle with eating addictions or being overweight it often seems that people like to project their own inadequacies onto others. Things like: why don’t you exercise more? or commenting on what I eat.

    Such behaviours can enable people to feel superior but it is very wearing and exhausting being on the receiving end and trying to explain oneself. People seem almost trained to disbelieve what others say about themselves, especially anyone see as ‘overweight’. These days I do not bother to explain but I do sometimes get emotional about it.

    I am interested to read that Dr Forman finds the support hosiery to be counter productive as my clinic are currently trying to ‘force’ me to wear thicker, stronger, inflexible hosiery, despite me saying how painful they are. The attitude seems to be that one should be able to bear some more pain rather than being concerned about what damage is occurring in the body – with the pain being the indication that this is happening.

    On the whole my experience is that patients are often treated as if they are lazy and/or mentally impaired. There appears to be little confidence that the patient is telling the truth about their behaviours or that they have any understanding at all about their body. I am constantly being ‘told’ what to do (no communication or collaboration) – even when I explain that suggestions are often counter-productive. I imagine most patients give up fighting an uncaring & uncooperative system that offers little or no real support or hope of improvement.

    It is my belief that the extra pain (as if one doesn’t have enough already) from wearing such unforgiving hosiery is due to forcing the lipoedema to press onto the nerves. I have heard of patients that cannot bear to be touched or even tolerate a sheet on their bodies in bed – being in constant, high levels of pain.

    My understanding is that once you damage the sheaths that cover the nerves they never grow back and one is left with a life of permanent and intolerable levels of pain.

    There seems to be no understanding that one might not be willing to be an experiment and allow that to happen to one’s body.

    The ‘advice’ to put patients in such hosiery comes from the manufacturers whom I have found to quote inaccurate research information to support their product promotion. Thicker, custom-made hosiery is more profitable for them so there is a conflict of interest which prevents them being totally objective.

    There is also a lack of focus on getting people with Lipoedema well and having a ‘normal’ life. I am constantly being told that I will not improve, that as I am getting older the condition will deteriorate and I should just give in and let myself be taken care of – as I become housebound and immobile. I find this attitude shocking, upsetting and unacceptable.

    Comparing the attitudes & behaviours of the medical professionals in relation to people like Aimee Mullins and that which people with Lipoedema endure it would seem we are almost living in different universes.

    I am slowly gaining more mobility, flexibility and better health, not due to the support and treatment I receive but despite it.

    Posted on 07-Mar-12 at 8:06 am | Permalink