Whether it is explaining to your family and friends what’s happening and how they can help you out, or talking about it with colleagues when you start a new job. It is good to have some tools and ideas ready to make those conversations easier.
It’s ok not to talk
Of course, you need to decide how much you are happy talking about with regards to your lymphoedema. If you do not want to discuss it, you should never feel that you have to. It is absolutely ok to tell people that you would prefer not to talk about it, if that is how you feel, or to close conversations down with a short reply. Do not ever feel that you have to share your medical history with a stranger in the street or get into detailed discussions with colleagues.
Having some answers ready to go
If you do want to talk, it is often helpful to have some simple ways to explain things to people. You don’t need to be an expert in the lymphatic system to be able to explain to people in simple terms what lymphoedema is and what it means to you. Being able to do this can help people around you to understand and support you better. Here are some simple answers to questions you might get asked, and some ideas on other resources you could send people to if they want to find out more.
Q: Why do you wear a bandage?
A: I have got a long-term condition called lymphoedema. It means that my arm / leg swells up because my lymphatic system doesn’t work as well as it could. This is a compression sleeve, and I wear it to help stop the swelling building up.
Q: What is lymphoedema?
A: Lymphoedema is a condition which means that excess fluid builds up in the tissues of my arm / leg, which makes them swell up. Normally your lymphatic system would clear this swelling but mine isn’t able to.
Q: What is the lymphatic system
A: The lymphatic system is part of the immune system. It takes waste products and fluids away from the tissues around our skin, fat, muscle and bone, and it also helps to fight infection.
Q: How does it affect you?
A: This one is very personal. Everyone’s lymphoedema journey is different and so everyone’s answer to this question is very different. It is ok to be very factual in your answer or to share more about how lymphoedema affects your life. How you answer will almost certainly change depending on who you are talking to, how much you want to share and how you are feeling that day. You might want to talk in purely practical terms about your compression garment or share more about the impact it has on your everyday life.
Having a conversation about your lymphoedema can be a really good way to let people know that you might sometimes need a little extra support. It can open the way to other conversations at home and at work about how friends and family can help with little things to allow you to carry on with your everyday life as well as possible.
Talking about lymphoedema also helps to raise awareness. When more people know about a condition, it is often detected and diagnosed sooner, and it can also help with fundraising and research. If you are talking to people about your lymphoedema, encourage them to find out more and explore it for themselves using any of the resources listed out below.
Useful resources for friends and family:
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Having a long-term condition such as lymphoedema can affect your romantic relationship. You or a loved one may have recently been diagnosed and finding it difficult to cope with what you are facing.
Lymphoedema: A Condition Kept Secret Until Now
Lymphoedema is a condition that affects millions of people worldwide. In America alone, it is estimated that “more Americans have lymphoedema and lymphatic diseases than AIDS, Parkinson’s disease, multiple sclerosis, muscular dystrophy and Alzheimer’s disease — combined.”
Understanding the Range of Emotions that you May Feel having Lymphoedema
Being diagnosed with lymphoedema can bring a variety of emotions. It is a life-changing condition, and understandably, you will experience some struggles while you adjust. Seeing your body change and the impact on your lifestyle can be challenging but know you are not alone.
The Public Face of Lymphoedema
Although it affects more people than Multiple Sclerosis, Muscular Dystrophy, ALS, Parkinson’s disease and AIDS combined – up to ten million Americans according to LE&RN – lymphoedema remains stubbornly out of the spotlight. Many have never even heard of the chronic illness.
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Don’t sit around and go through this in silence. Share your story. Doing that was a real eye-opener for me
Claudia Lymphoedema patient