By Lucy Atkinson

An invisible illness, chronic pain is often misunderstood and misdiagnosed simply because it can’t be seen. Our guest blogger, Lucy, describes the challenges of living in near-constant pain, the main source of which is her Marfan syndrome.

Over the last few years, I've been very open about my life with Marfan syndrome and numerous health conditions, but I haven't been quite as forthcoming with those around me because if I'm to be honest, I struggle to fully express the significant impact that chronic illness/health conditions have on my day to day life. I don't look like someone with chronic illnesses. I don't use a wheelchair, a stick or any disability aids, so I'm afraid of telling some people in case they think I'm over dramatising it.

But that is far from the truth. I've lived with chronic pain for a long time now, gradually building up and becoming more widespread over the years. I've learnt to become good at pushing my unpleasant physical sensations aside to get on with my everyday life though, so no one would ever guess it. No one would know (unless you are my Mother) that on a typical day I experience several different types of pain and discomfort throughout my body, ranging from moderately annoying to severe. My connective tissue disorder, Marfan syndrome is the main cause of all this. My connective tissue isn't strong enough to support my joints, ligaments or internal organs, so this causes me to live in almost constant chronic pain. I'm usually experiencing various aches and pains when I get up in the morning, which worsen as time goes by and more often than not, I go to bed with the same amount of discomfort that I woke up with. But as a matter of necessity, I've learnt to carry on with life's daily activities regardless of how I'm feeling. I get up. I dress up, and I go about my day as normally as I possibly can. I smile, laugh, and enjoy my family's company, but I am hardly ever completely symptom free.

I also have an autonomic nervous system disorder called PoTs (postural tachycardia syndrome), something else I've picked up as a result of Marfan syndrome. PoTs alone can be a lot to cope with, let alone combined with a connective tissue disorder! The autonomic nervous system regulates vital bodily functions, so mastering the art of adapting to life with PoTs hasn't been an easy challenge. The symptoms for me consist of near syncope, nausea and tachycardia, as well as some less obvious ones like fatigue, weakness and GI dysfunction.

It frequently impairs my ability to do things in a 'normal' way and I have to set aside some recovery time after carrying out simple tasks like washing my hair, dressing and showering. I often end up sitting or lying down in the middle of doing these things as being on my feet brings on the symptoms. I can't finish a meal in less than an hour because my PoTs related gastric issues prevent me from eating as fast as 'normal' people. I'm known very well by my family for being the slowest eater ever! I don't talk much about life with PoTs though as it's all a bit hard to explain when no one's ever heard of it. Plus, I don't 'look' like someone who has to rest after taking a shower, so would anybody even believe it? I can stand, walk, and talk, so I feel people would assume it can't really be that bad. 

I don't just live with Marfan syndrome, PoTs and chronic pain. I also have various other conditions including Epilepsy, a full thickness rectal prolapse, and PCOS (polycystic ovaries). I'm currently awaiting bowel surgery to fix the prolapse but at the moment it's causing its own set of problems. I hope to have it rectified by next year at least, as it's something I've lived with for almost two years now, and again, it was caused by my faulty connective tissue! It's not exactly a pleasant topic to discuss so I've mainly kept it to myself apart from on my blogger account where I have spoken out about it occasionally. The purpose of today's blog was just to bring attention to the fact that a person can 'look' good, or even great, and still be living with long term health conditions or chronic illness/s. Someone can be happy and enjoy life, but still feel unwell due to their medical problems. More often than not, I just choose to remain silent about it because I don't want to moan, and it's hard to explain. But it's important for others to remember that chronic pain is invisible, and so are some long-term health issues, like Marfan, PoTs, and epilepsy. 

About Lucy Atkinson

I’m Lucy & I was diagnosed with Marfan Syndrome as a teenager. I’m an occasional blogger who often discusses life with chronic illness/health conditions. I also like coloured eyeliner and piercings. I’m from North West England. U.K.

You can read more over on my blog

Please note that the views expressed in this article are those of its author. The Marfan Trust is not responsible for the medical content of comments posted by others on these blog pages. If you have specific medical queries, please email [email protected]

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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