L-W-O Community supports primary and secondary lymphoedema by promoting emotional wellness, lymphatic health, self-care, patient empowerment, online and in the community.
Emotional Health
Lymphoedema must not define who we are
Mental health and emotional health are related, but mental health is not the same as emotional health. Emotional health is about how you feel and what you think every day. Mental health is about your cognitive abilities and how your brain works.
Emotional health has an impact on our physical health, particularly when living with a long-term incurable condition such as lymphoedema. Learn how it affects our members and gain some tips for boosting your emotional health.
Lymphedema is more than just swelling. While I do not like to dwell on the negative aspects of lymphoedema, it does have many problems, and we are all affected differently. As a result, it is critical to highlight and explain how those of us who live with lymphoedema feel from time to time.
Even among your family and friends, there will always be someone who does not understand how you feel or the daily routines you must follow to manage your lymphoedema.
This webpage discusses how lymphoedema affects your emotional health and provides advice for making simple changes to improve both physical and emotional well-being.
There is one very important fact that we all need to remember. The images that we see on TV, in glossy magazines, and in print are most likely to have been airbrushed and made up to look perfect. As a result, the image you see may not be accurate.
POSITIVE THINKING
So what can we do to help ourselves?
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Surround ourselves with positive people
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Don't waste time worrying about what other people think
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Be kind to yourself and do what makes you happy
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Our uniqueness stems from our imperfections
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Love yourself for who you are today
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Every day tell yourself something positive about yourself
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Seek learning and problem solving opportunities to keep the brain active
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Include antioxidant-rich foods and omega-3 fatty acids in your diet to reduce inflammation and enhance cognitive function
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Maintaining gut health is crucial because the brain and gut are closely connected. Consider taking prebiotics or probiotics to support healthy bacteria.
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Avoid excessive alcohol consumption and smoking, as these can cause inflammation and harm both mental and emotional health.
Anxiety
Signs and Symptoms of Anxiety;
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Fatigue
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Irritability
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Muscle Tension
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Poor concentration
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Restlessness
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Sleeplessness
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Worry
Lymphoedema generates anxiety because you are continually concerned about what could go wrong, and there are numerous factors to consider when managing your lymphoedema. One of the most common concerns among lymphoedema patients, both primary and secondary, is that their condition is not taken seriously, and many believe they are not being heard. The following is a collection of the most common thoughts expressed by our online members.
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living with the do's and don'ts
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lifestyle changes
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compromised immune/lymphatic system
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anxious that you are a bite or scratch away from infection
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anxious if someone else coughs or sneezes over you
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constantly tired
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no energy
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frustration with people who really don't get lymphoedema
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anxious trying to explain what lymphoedema is
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in the case of secondary lymphoedema it is a constant reminder that you have had cancer
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knowing you are cancer free but left with a disability
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mobility problems for both Primary and Secondary lymphoedema
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not recognised as a disability for both Primary and Secondary lymphoedema
March 2024, thoughts from two L-W-O Support Group members
"The constant struggle with footwear and the dreading hot weather as you know getting support hosiery on and off becomes even more difficult. With no hope of a cure, sadly this is unlikely to change."
"Having to organise holidays/outings to fit in with it so that it stays under control. No going away to hot places, always making sure that there is somewhere shady and cool, no going walking when it is hot and sunny. Also the heavy achy feeling which is often present."
Body Image
Body image encompasses our perception and emotions towards our physical appearance, as well as how we believe others see us. It's a complicated subject influenced by a variety of factors, including media, social comparisons, and society norms. If you're battling with body image, here are some ways to help:
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Focus on Positivity
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Focus on the things you like about yourself
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Concentrate on your qualities and skills
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Stop comparing yourself to other people
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Images in glossy magazines maybe airbrushed
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If you need help consider talking to a health professional
Body Image can affect lymphoedema patients in the following way;
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low self esteem
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knowing you have to wear compression garments everyday of your life
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affects the type of clothes that you can wear
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affects how clothes look
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concealing what you perceive as being an imperfect body image
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even if others can't see your scars you know they are there
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finding clothes that fit you and your swollen limb
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finding shoes for swollen feet is a major task
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stockings/tights and socks big problem
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worrying about how other people see you
Imagine what it is like for those who wear compression garments or have multi-layer lymphoedema bandaging (MLLB). Finding solutions to clothing problems is a huge task.
Trousers and shoes, as the above photograph shows, are very difficult for someone living with lymphoedema in their lower limbs. Thank you to Lisa for allowing me to share this photograph.
Then there are the constant explanations to...
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the well-meaning person who asks lots of silly questions and still doesn't comprehend how you feel
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people who pre-judge you and assume your condition is all your own fault
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feelings of being different
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limbs that become very swollen
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limbs that are disfigured
Counselling
Listening to the members on L-W-O Support Group I am beginning to feel very strongly that when a diagnosis for lymphoedema is made that counselling should be made available. With a review 12 months after the initial diagnosis and further reviews if needed.
I do not think it is fair for qualified therapists who administer treatment to have to act as counsellors and deal with the emotional problems their patients have, because of their lymphoedema. Most therapist's will only have time to treat the lymphoedema, measure affected limbs and fit compression garments. They will not have the time to listen to all the associated problems lymphoedema causes. Yet these very caring people do exactly that, they do listen often at a great emotional cost to themselves.
L-W-O members have identified that their emotional state often caused a breakdown in communication between themselves and their therapists. The patient then leaves clinic angry, frustrated and upset, this causes stress, which then exasperates their physical and mental well-being.
This is not the fault of either the patient or the therapist but of a healthcare system that does not understand lymphoedema and its associated problems. Therefore we need to have more counselling services available.
One other solution would be for lymphoedema services to offer Mindfulness sessions: Check out our video:
Feelings
Definition of Feelings
Feelings - the emotional side of someone's character, emotional responses or tendencies to respond. www.oxforddictionaries/definition/english/feeling
Lymphoedema causes feelings of anger, worry, irritation, and, in the case of secondary lymphoedema, sadness for the life we previously had. Or, in the case of primary lymphoedema, a life where you have never known anything else, but life nonetheless grinds you down in the same way.
It is difficult to describe the emotions of depression and loneliness that lymphoedema patients experience. Psychological disorders exist, but they are unlikely to be as visible as physical symptoms.
The impact of learning you have lymphoedema, a chronic condition with no cure, should never be underestimated. Lymphoedema has a significant impact on your quality of life, and you must learn, as one of the online members put it, "what is doable."
Simple tasks, such as filling the kettle, can be exceedingly uncomfortable. Ironing, vacuuming, and other chores required to keep our homes looking nice can be extremely painful.
There will be others who argue that housework is not vital. When applying for welfare assistance in the UK, you are asked if you can bathe, dress, and prepare your own meals. The fact that you may be unable to do housework or keep your house tidy is immaterial to the assessors.
I would say that it is relevant because I enjoy living in a clean, neat environment. Why? It improves my mood and makes me feel better, which contributes to my mental well-being and, as a result, helps to preserve my physical health.
Frustration
Question to online support group members,
"What are your biggest frustrations"?
Wow this question really did get our members venting their feelings.
Members who blame their cancer for their lymphoedema are the angriest. So, not only have they all endured the miseries of cancer and its treatment, but they have also been diagnosed with lymphoedema. The absence of warning, education, and knowledge emerged as the most significant. Members were extremely angry that they were not advised about the potential risk of lymphoedema before to and following their cancer surgeries. They were unaware that radiation treatment could cause lymphoedema.
In my case, I was neither warned or informed about lymphoedema other than the fact that my breast cancer treatment plan had a local phone number in case I developed this condition. At the time, there was so much to process that an inconsequential page with a phone number did not register.
Unless identified from birth, members of the Primary lymphoedema community are extremely disappointed by the length of time it takes to receive a diagnosis. Several members cannot receive a diagnosis because no one will listen or refer them to a specialist unit. However, these members are aware of their own bodies and understand that something is wrong.
I have already touched on household chores and why this is important but the frustration felt by our members for not being able to do the simplest task really did get them going. The fact that they lose their independence because, they have to ask someone else to do things for them is demoralising.
Below I have put some of the posts that are members have added to our online support group.
"That no one, not even the medical profession, understands the condition. That you have to fight for everything and advocate for your self. It is exhausting!"
"Not being able to get medical support as nothing in my area and GP knowledge limited. No consultant at local hospital, only one nurse practitioner and one appointment every 14 months. Mostly feeling like I'm on my own trying to manage."
"Still the lack of knowledge by healthcare professionals. Finding that I cannot use a pool at the hospital as my lymphoedema is not related to cancer. I cannot get a grant towards a LymphAssist machine again because non-cancer related."
Online Support Group
I dedicate this page to the online support group of L-W-O Community. Members are compassionate, knowledgeable, and supportive of each other, regardless of whether they have primary or secondary lymphoedema.
If you feel that you are not getting the help and support you need, then come and join us at:
https://www.facebook.com/groups/LWOSupportGroup
or
Click on the poster
