The emotional strain of lymphedema is something that I see and hear every day through my social media accounts and emails that I receive from people who have LE. It’s an understatement to say that it’s psychologically challenging to live with lymphedema, especially the early days when you feel alone, embarrassed and hopeless.

Whilst more and more information is becoming available to help us manage the physical side of lymphedema, there seems to be very little which helps us deal with the emotional struggle that so many of us go through during our lymphie journey. The thing that I’ve realised is the psychological and physical sides of living with lymphedema are very much intertwined and dependant on each other. When one isn’t good, the other seems to always suffer. Suffering emotionally will impact the way you manage your lymphedema, which is why we need to train ourselves to snap out of the dark side and move forward to a different way of thinking.

When reality and expectations clash!

swollen leg and non swollen leg
My leg during its worst stage in 2016

Anyone living with lymphedema will confirm that it can be emotionally draining and severely challenging for even the strongest of characters. In the early days of my diagnosis, I mentally struggled for a variety of reasons- the physical change I saw my body undertaking was stressful. Not being able to stop or control my limb from expanding before my eyes was extremely worrying and frightening. The amount of work that went into keeping my leg healthy was huge and quickly becoming overwhelming. I was doing everything I could think of to make my leg better but it was actually getting worse and out of my control. All these things built up to breaking point and caused me to panic and declare, “It’s too much! I’ve had enough, I give up!” I felt terrible in myself and couldn’t believe this was happening. My life and leg were out of control and I had no power to stop it.

Reaching such a low point is dangerous for any lymphie because ‘giving up’ and cutting off mentally from the responsibility of caring for your condition has some pretty bad consequences (I speak from experience!). A big part of my problem was that I had unrealistic expectations of what I wanted to achieve from my management within a certain time frame. I was putting way too much pressure on getting immediate results and getting very disappointed when nothing happened.

Medium-term goals for long-term gains

One of the best things I ever did for my lymphedema was to snap out of the habit of thinking negatively. The moment I did this, things became a lot easier. It’s not easy to do at first and a lot of the time you have to ‘fake it till you make it’. You need to actively choose to think positively about your lymphedema and not be overwhelmed into giving up. After a while, it becomes second nature and you will find that you are having less bad days.

One way I’ve managed to do this is to use medium-term goals in managing my lymphedema. Using medium-term goals is great because it means you review your efforts after say, one or two months, and see what’s working or what needs changing. It’s all about staying focused on little tasks and realising that although you can’t change everything overnight, you can have little successes along that way that add up to big ones in the end.

Setting medium-term goals will bring long-term gains, both physically and mentally. Thinking too long-term, or too short-term is not useful for me. Deep down I want immediate results but I know this is not possible. Long-term goals, on the other hand, are impossible because lymphedema is always changing. This is a super important point to remember because it means that YOU have to keep on adapting your approach to managing it! This is not the end of the world, I promise. It’s a good thing to understand because if you keep doing the same thing while your leg isn’t responding you will never move forward. Actively reviewing your medium-term goals is the best balance to help do this.

So how can you adapt this to your own life with lymphedema?

  1. Train yourself to calmly identify when something isn’t working and problem solve: Why is this not working? What elements are involved? Know that there is a solution to be found, you just have to problem solve a bit to get there!
  2. What are my options? Not sure- ask a friend, get on social media and talk, ask your lymphedema therapist questions, find someone who has experienced the same things as you and get their opinion. Or you could be totally crazy and try something you think will work but has never been done before!
  3. What tools do I need to implement my new strategy? Get set up properly and quickly- Is your leg swelling under your desk at work but it’s already elevated on a stool? Maybe it’s not high enough- you need to elevate it higher so find something to do this! Maybe you are not taking enough breaks from your desk during the day- can you work at a standing station for some time? Can you do small exercises to help the flow of lymph under your desk? Is your clothing contributing to the problem?
  4. Put the strategy in place– care for your limb using the new strategy, relax and try not to stress! Do this for a period of time without thinking too much about it- you need to be patient and give it time to work.
  5. Tweak the strategy if needed– Everything is going well but maybe there is something that’s not quite right. Make adjustments along the way- you are not bound to follow a strict plan, be flexible!
  6. Review the strategy after one or two months– look back at everything you have done and see how far you have come to achieving your goal. Have the changes you made helped? Do you need to refine it further and keep trying for a bit longer? Don’t be upset and slip back into negative thinking mode because it’s not working- just keep mixing it up until you find a solution that suits you.

My Life Motto: “Rules are for other dickheads!”

This is one of my favourite mottos in life and I say it all the time! Yes, there are standard guidelines in lymphedema care that are extremely important and need to be followed but at the same time, you also need to listen to your body and follow your gut instinct!

Don’t be afraid to experiment with things if they aren’t working. Don’t be afraid to go against the advice of a professional if you feel it’s not working for your personal circumstances. I’ve done it a few times and it’s always ended up to be the right decision. You know your body best so if you are not responding to a certain treatment, change it up! Don’t continue to blindly follow a routine that is not working just because the textbook says “this is the best way.” That’s bollocks!

There is always a solution to every problem, even in the world of lymphedema!

Sarah x





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