The idea behind the Lymphoria project – a term including both the website and Instagram account – was quite simple: It was my hope that I by sharing my story and experiences would be able to help others who felt as alone as I had felt dealing with lymphedema.
You could say that the idea came out of desperation and frustration. For years I had experienced health professionals not being able to give me very much information to base my lymphedema life on and I felt like I had to figure everything out myself. I even travelled abroad to meet with foreign specialists in the hopes of gaining more knowledge about my situation and possible ways of dealing with it.
At some point – after living with lymphedema for about 5 years – I had a huge pile of information on all kind of subjects relating to lymphedema – and why not share these informations? Why not try to pass it on to others who might be able to use it to possibly improve their own life with lymphedema?
And so I sat down by my computer and wrote. I wrote for months and months. This resulted in me posting my first picture and story on Instagram on the 22nd October 2017 and a few months later publishing a lot of my writings on the website Lymphoria.com.
Today it is exactly 1 year ago since I opened that Instagram account. All in the hopes of it being able to contribute to helping others in a similar situation. What I did not expect when I started this project was how the project would turn out to change the way I myself deal with my lymphedema. How those I hoped to help actually turned out to help me. And how the project would give me the opportunity to spread awareness about lymphedema and share my experiences in ways I had never imagined.
That is why I have written this short birthday piece. To sum up the year that has passed and to talk about the year to come – and to say thank you.
WHEN THE ROLES ARE REVERSED
The Lymphoria project was me taking a step out into the light. It was not easy. It is always more convenient to stay in the shadows, live your life and not use your own story to promote a cause. Your story is personal – and it is yours to keep, with all its ups and downs.
But in my case it did not add up; people all over the world are struggling with a condition that gets very little attention and where patients are left to figure most things out themselves. Of course we have a few talented specialists, but they cannot take care of all the millions of people who suffer from lymphedema – that is simply not possible. This is why I decided put my story out there. To put it out there in the hopes of it being able to make a difference for someone. If only one other person with lymphedema could improve a minor detail in their life by reading a bit of my story, it would all be worth it.
Stepping into the light turned out to be a game changer for me. The second I revealed myself and my story I was welcomed into a knowledgeable, inspiring lymphedema society on social media. I discovered that there are many inspiring lymphies out there sharing their stories in their own ways. I did not only get the chance to pass on my own knowledge, I got a chance to learn much more from others in similar situations.
However, the most meaningful part of being part of the community snuck up on me even without noticing. A few months back I realized that the longer I had been part of the community, the more I dared. Being part of a larger group working to create awareness about lymphedema and helping each other improving their lives living with this condition gave me the courage to constantly taking new steps. Overcoming fears. Every day. Among other things, this resulted in me suddenly finding myself not being scared or uncomfortable showing my compression stockings in a professional setting. Even with the risk of being confronted by co-workers or work-related collaborators and having to explain why I am wearing the stockings. It resulted in me actually wanting to go out there in the public, stating my name and speak publicly about lymphedema.
It has actually developed to the point where I encourage people to ask me about my stockings or legs instead of them trying politely to look away from my legs.
Throughout the year my courage in this area has grown every day to a point where I am no longer ashamed or uncomfortable about my lymphedema in any kind of setting. And it is my belief that this is a result of stepping into the light and becoming part of a larger community of people dealing with lymphedema. A community that constantly encourages one another to break personal boundaries and believe in yourself, despite having in some ways a broken body. For that I would like to say thank you. Thank you for contributing to giving me a better life with lymphedema.
WILL YOU TAKE THE MICROPHONE?
I was nervous like never before. In that room sat health professionals, lymphedema specialists and lymphedema patients from all over the country. And in a few minutes I was about to speak for them. Tell them about my point of view on cellulitis/erysipelas infections in lymphedema patients and how to tackle and prevent these infections. There was no turning back now; I had to step up on that stage.
In the late spring of 2018 I was approached by one of the top lymphedema specialists in Denmark asking me to be an invited speaker at the seminar hosted by the Danish Lymphoedema Framework. An event only held once every two years. I was so excited and felt incredibly honoured – and I immediately accepted.
But as always, life has a tendency of sometimes throwing you a curve ball and only a few weeks before the seminar I was diagnosed with cancer. Once again. The surgery was planned to be performed only a week before the seminar and I was devastated about the thought of me possibly not being able to give my speech. But on the day of the seminar I got out of bed, more determined than ever, and I went up on that stage as originally planned. This speech was too important for me to cancel. No matter the circumstances.
It was with a great amount of respect for the health professionals and engaged lymphedema patients sitting in the crowd that I spoke. I had only been given a subject in advance: The cellulitis/erysipelas infections seen from a patient’s point of view. I chose to focus on how the experience of the infection has changed for me over the years as a result of getting better at controlling the outbreaks; how a stressful environment seemed to be able to worsen the outbreak and prolong the recovering period; how severe acute stress seems to be able to trigger the infection; the importance of the medical treatment being aimed specifically at a lymphedema patient; and how I have chosen to deal with the fear that naturally lies within you as a patient constantly being at risk of getting a new outbreak of the infection. All subjects with the underlying message being that lymphedema – and the constant risk of getting seriously ill with the infection – does not have to control your life in a negative way and that you, to a large extent, can control the situation and create a great life for yourself.
It turned out to be one of the most amazing experiences I have ever had. For years and years I have felt like I could not get through with my thoughts on lymphedema in the health care system and now I was suddenly standing on this stage, in front of the most influential lymphedema people in Denmark, and giving them my point of view on this important subject. I was humbled and thankful.
There is no doubt that it was both physically and mentally too big a project just one week after my surgery. Barely being able to stand afterwards out of pure exhaustion and having the need to sleep almost constantly the following three days, well, that was a prize that I did not mind paying. It is my hope that my speech – through the health professionals attending the seminar – can contribute to making a difference for others dealing with lymphedema.
WHAT IS TO COME?
The obvious question now is: What will happen from this day forward?
Looking back on the past year I do not dare predict much about the future. One year from now the scientists might have found a cure for lymphedema. You never know.
But as far as the Lymphoria project goes, I am not in anyway done. I still have a bunch of articles to finish on a long variety of lymphedema related subjects and I still have a lot to learn about my own lymphedema and lymphedema in general.
Besides this, I also hope that the following year will give me the opportunity to do more public speaking about lymphedema in an attempt to create more awareness about this subject and to perhaps be able to contribute positively to others struggling with this condition.
Most importantly, I am going to walk through life not feeling embarrassed or ashamed about my compression stockings and my swollen legs, because the Lymphoria project and its followers has given me the courage to do so.