Lucy continues her candid blog in which she discusses the aesthetic implications of Marfan syndrome and the unwarranted attention it brings. If someone out there has advice for Lucy, or a similar story they wish to share, please email the Marfan Trust.

I haven't felt my best self this year. Trying to cope with the emotional and physical challenges of daily life with Marfan syndrome is stressful enough in itself. But like many individuals living with the condition, I've had the aesthetic implications to contend with too because my weight has plummeted to just over 6st and my distinctive physique has become more strikingly obvious, leading to an onslaught of harsh and critical remarks about my skeletal frame from people who know very little about Marfan syndrome and the way in which it manifests itself in the affected individuals and their weight.

Being thin is not a choice for some people with Marfan syndrome, and it's not something that is ever likely to change, either. It's sometimes difficult to regain weight once we've lost it too, which I can clarify from my own experience. Although I've tried to explain my physical appearance to several different people by giving them a detailed explanation of my health condition, they still don't seem to understand it and I've been 'skinny shamed' on numerous occasions. I realise that most people don't mean any harm, as their comments are well-meant, but I'm finding it harder to tolerate lately as I'm just fed up of having to go over the same thing with different people who are judging me based on my looks/Marfan-body-type. I was recently body shamed by a lady who openly pointed out my "stick-thin arms" as she went on to ask if I "liked being this thin". I mean, seriously, what did she want me to say? "Yeah, I love being so thin that my veins are more prominent than some 90 year olds" I apologise for my harsh tone, but losing so much weight has taken its toll on my already fragile body and quite frankly, I was offended that she thought I would "like" being so underweight. It's impacted on my chronic pain which has become more persistent and, amongst other things, I'm struggling to sleep at night. So my manner isn't very pleasant when approached about my slender build at the moment. 

I eventually had to have a lengthy discussion with my GP regarding my gradual weight loss, and she feels, understandably, that at just over 6st, I am far too underweight. She agrees that Marfan syndrome is almost definitely contributing to my abnormally slender physique and is quite possibly making it harder for me to add some much-needed pounds, but there may well be something else altogether that is causing the actual weight loss. It could even be something Marfan-related, such as the on-going gut problems that I suffer with as a result of a complete bowel prolapse, or my really poor digestion. So she's running some tests and I'm now under weekly observation with her as she wants to monitor my weight to try establishing what's going on before she refers me to a specialist. 

I'm not gonna lie guys, I'm really disheartened about this. I'm still eating 3 meals a day without fail, which hasn't changed. So there's no justifiable reason for my weight loss. I've been 'Marfan thin' for most of my adult life now, but this is the first time I've gone below 7st and needed intervention. I'm upset that this has happened but I feel like it's a prime example of the implications of Marfan syndrome. Although I'm not happy with my current situation, I accept the fact that I would probably benefit from seeing a specialist of some sort. I just hope they know how to treat me accordingly, as some professionals still don't know about connective tissue disorders.

Marfan Trust, a CIO registered as a charity in England in Wales with charity number 1198847 at: c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
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