I've had Lymphoedema for 15 years; 13 diagnosed. During these defiant years I've had lots of time to observe- from the sides of a hockey pitch or netball court when my leg was too painful for participation in school sport lessons (only thankful for this when it was raining or freezing cold), but also from sun loungers in holiday, at a bar or nightclub, on social media. During this observation time I have finally decided to rename Lymphoedema, what I suffer with, as Ticking Time Bomb Syndrome (TTBS).
TTBS falls on many scales. Just as with a time bomb, you are ever waiting for the explosion, except, with Lymphoedema it's an explosion of emotions (or the next bout of cellulitis). Life with Lymphoedema is constant countdown. Counting down to the humid, irritating summers, counting down to treatment (and how many days until it's over with), counting down to cooler temperatures, counting down until new garments and hosiery arrive. You then either explode with happiness (new garments) or with annoyance at the rest of the general public swanning around in cute flip flops and sun dresses. The countdown stems from previous experiences of knowing what discomfort is ahead in the summer, that you'll struggle to find suitable clothing and shoes in the winter that will disguise the swelling.
Another symptom of TTBS is the jealousy. On too many accounts I've happily admitted that I'm jealous (no point hiding it), jealous of my friends... not for their new play-suit, car or engagement ring, but for their 'normal' legs. Sometimes wishing they knew what it felt like to be you for a day; to feel the stares of strangers, to witness the looks of pity, to feel discomfort in a shoe shop when the assistant gawks at your inability to fit a 'wide fit' shoe on as though you are one of Cinderella's ugly sisters!
On social media I've noticed an increase in TTBS. I've been running my Facebook group 'Lymphoedema Fashion' for a few years and have noticed of late, that lymphies are now highlighting their jealousy of other lymphies. This is a whole new territory! We all wish we had 'normal' limbs, but surely sufferes of the same condition should be united in helping each other, encouraging each other and showing support for the victories of downsized limbs from hard work. Reading the words 'Do you even have the condition?' etc. breaks my heart. We have enough to deal with regardless of other lymphies joining in on the abuse... especially regarding limb size. Some people are further into their lymphie journey than others. We should learn from each other. I know individuals who have been abused with taunts about their limb size, but they have tried every diet, treatment, exercise regime available to help their lymphatic system function. Everyone has a day where they don't feel the most positive- it's what life is about- the ups and downs. What's not the correct attitude is to lash out at others for their effort to maintain their limb, to make yourself feel better.
I think having Lymphoedema is empowering... another TTBS symptom. It forces you to take a stand. You want to help others in the same situation, even make their life easier. You try and allow an insight into your life- your day to day routines that aid you. Also, sharing is caring. By both sharing and caring, it encourages others to care and share their experiences, but also it helps the nervous newcomers to the condition cope a little easier, by giving out knowledge you wish you'd known when first diagnosed.
I sometimes feel blessed to have this condition (yes I have a fat leg, but not all is bad). I feel I've had to love myself and my shell- it's the only one we have, mine is far from perfect but you have no choice to alter some features. Suck it up princess attitude kicks in. I think I have a better sixth sense- I can usually tell if something will go my way and the reason behind it. I feel extremely blessed that I have an excuse to buy that extra pair of shoes or trousers in every possible colour 'because these ones actually fit'.
Most of all, I would never have started up a group, blog, twitter feed, pinterest and instagram accounts if I didn't have this condition. It has made me confident in who I am and what I want in life. This condition has given me the opportunity to meet individuals who I am honoured to call my friends (some of the strongest women and men I have encountered).
All in all, TTBS isn't a BAD thing as long as it stays under control... as long as you do everything in your power with all your effort to keep it under control. Don't ask 'Do you even have LE?', ask 'How did you get your leg to look that great? I need to know your tricks!' Politeness is a MASSIVE deal when you've been stared at most your life. Positivity is another important factor, especially between lymphies. Our confidence needs all the boosting it can get. You get given the diagnosis followed by the words 'You'll have this forever, it's one of those things', face it, it's an ugly looking condition. By telling us, your limb looks really great today or that's a cute pair of shoes, I love your scarf... it makes us feel appreciated and valued and that we are doing a pretty good job on the surface of the iceberg.
Hopefully, we'll become as well known as the cancer treatments that cause a lot of Lymphoedema. We should be positive rather than settling for the ugly face of jealousy. With twice as many Lymphoedema sufferers as those with Parkinsons, surely we need to embrace who we are and what we have on our side- each other, support, and a good reason to shop...
Love you all lots
xoxox
Copyright Lauren Toner 2011-2014
Well said Lauren
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