I have had ‘big legs’ for as long as I can remember. Even as a teenager I remember clothes never fitting the way they should and never being able to fit into boots because of my legs.
I began to self-harm as a teenager, and over the years, this meant my body began to look very different due to scarring. It was only when I had multiple occurrences of cellulitis in my legs and was struggling to mobilise as a consequence, that it was mentioned that I may have lymphoedema. I was seen at a clinic in Gloucester, where I was living at the time, and they sent me on my way with some leaflets and some bulky, ill-fitting garments.
When I returned home, I was seen by the team at LymphCare UK in Dudley and they were absolutely amazing. They did testing on my legs to establish the fluid levels, talked me through what was going on and eventually gave me the right diagnosis of lipoedema.
I have continued to be under the care of the team and I cannot praise them enough for all that they have done for me. It’s not only about the physical symptoms of the condition but the effects it has on your mental health and your wellbeing as a whole.
Being diagnosed at such a young age has been isolating and it’s so frustrating that medical professionals often don’t know what lipoedema is, but I have done endless amounts of research of my own and being supported by the team has made my journey so much more bearable.
There is so little education for medical professionals. Medical letters written about me often document that I have lymphoedema – which I do, as a secondary diagnosis – and it’s because the medical professionals involved don’t know what lipoedema is, and just assume I mean lymphoedema.
I have wrestled over the years with compression, as my autism means I struggle with sensory issues and often can’t manage wearing garments all day. However, since being given ‘Comfiwave’ by Haddenham, which are stretchy and worn at night, my relationship with compression has completely changed. I also recently discovered some long socks which fit over my legs and I could have cried, as it’s been so long since I could wear anything other than ankle socks.
If being open and sharing my lived experience helps even just one person feel less alone, then I will be happy. I’ve spent so long hating my body and hating my reflection, but both my body and mind have been through an awful lot and I’m still here. I feel that my main purpose in life is to be able to support others and advocate for what can be an extremely debilitating condition.
By Emily Cope
