Becoming a Strong Self Advocate!

Self advocacy is being able to speak up for yourself, for your needs, communicating in a positive assertive way so that you are seen, heard, valued, and listened to, so when you walk away from an appointment or a conversation you know your concerns were acknowledged and understood, it is all about empowering yourself to stand up for what is important to you, to what you know is your lived reality and articulating that so you are heard.

So what does the above conjure up for you? I cannot express the importance of becoming a strong self advocate enough, when living with Lymphoedema and or Lipoedema, so I put these questions to you to reflect on

• What has your experience been?

• How did you handle a situation when you felt you were not listened to, or your experience was ignored?

• How did you feel either way?

  
  

• What did you notice you could improve on, for next time?

• Also the positive experiences, when you came away feeling lighter with confidence?

Our Health System/Medical model

Experiencing a newly diagnosed health issue, or one you've been living with for some time, can be overwhelming. Even just knowing that something feels off in your body and that you need answers can be a lot to handle."

It can be a daunting process when you are placed into situations, conversations or environments where you feel shut down, disempowered, ignored and vulnerable, often within the health system itself the patient is not seen as the expert in their own health, there is an imbalance of how some medical professionals may sit in a position of power, take on the authoritative role, focus on quick fixes, often prescriptions and not allowing the patient to have space and time to express themselves.

As the patient it is important that you recognise your concerns and needs, ultimately it can be a dehumanising experience. It is important to recognise that a patients insights, concerns, and experiences can be just as critical to treatment and recovery as a doctor’s expertise, my thinking is their needs to be a collaboration between all those that support and care for your condition so everyone is on the same page working in your best interest including yourself to achieve the best possible outcomes that enhance the quality of your life.

My experience with the health system has been one that has created a huge sense of mistrust over the years, I would go to the extent of saying it has often been an abuse of power, very clinical, disconnected from my needs, hidden agendas, (another story) time focussed and I often have come away just shaking my head in sheer frustration and sometimes in tears.

• One specialist when I was being advised I had to have minor exploratory abdominal surgery (private specialist), weighed me and made visual hand to mouth actions, insinuating that I ate too much, after the appointment, I phoned the surgery he came from, advising them of his belittling and discriminating treatment of me and that I did not want him touching me, a new surgeon was appointed, result of the surgery - I become very ill with abdominal cellulitis, they thought was flesh eating, thank goodness it wasn't, but I was put into isolation and on IV antibiotics, this was the beginning of understanding my abdominal lymphatics were affected and advised no specialist would want to operate on me in the future due to the huge infection risk on my life!

  
  

• Here in Australia, I finally was able to get into a Lymphoedema clinic, a doctor and a lymphoedema therapist, I was rather excited at the prospect of actually going to a group of professionals that specialised in Lymphoedema, sadly not to be, within ten minutes advised I needed to have weight loss, bariatric surgery, umm I just told them about the above issue with surgery and huge infection risk, so I stood up, put my trousers on and advised I clearly know more about this condition than you and abruptly left, I was so overwhelmed with sheer frustration and sadness fuelled with disillusionment as this was a service specialising in Lymphoedema care, this situation took me some time to recover from and I really became aware that I had to armour up!, I had to walk the talk, the system had let me down once again, I was well aware these situations triggered of emotions from past experiences that were detrimental to my health and wellbeing, I had fought so hard to get to where I was and I was not prepared to be placed back into that vulnerable situation ever again.

• When I initiated private care when I was first diagnosed, I learnt how to do the layered bandaging while I waited for my toe to chest compression pantyhose to arrive, I had put so much effort in, around 5 hours a day bandaging to keep the swelling at a level, went to my GP, he goes, 'well thats a very big bandage', almost laughing, at that stage I was just blown away, think I tried to explain it, but decided, do I need to put myself there, NO, he wasn't interested in understanding any of it, I left for a dentist appointment on the same day and the dentist knew all about Lymphoedema and was totally supportive so that was encouraging.

  
  

• I have also been privileged to hear from many from around the world over the years of their experiences, some so appalling that it is hard to believe this even happens, but it continually does to this day, but also the strength and courage from these individuals taught me to have hope in the importance of allowing our voices to be heard, mine included and yours!

  
  

Back to it, hope I am not getting side tracked :)

The healthcare system, while essential, can sometimes make patients feel sidelined or dehumanised, especially when the focus is on quick fixes or a clinical approach that overlooks the emotional and psychological aspects of both need and care. The imbalance of power in medical settings can lead to people feeling like their voices don’t matter or that their lived experience with a health issue is not valued.

It’s also important to acknowledge the immense stress this puts on people navigating their health. you want to trust the system, but if your voice isn’t being heard, it erodes that trust. At the same time I recognise the clinical, time-focused approach is invaluable in emergency situations. There’s a time and place for both— having a balance between efficient care and empathetic listening would be ideal. It’s the human side of healthcare that so often gets lost in the shuffle.

With a lymphatic condition often the diagnosis is not made by a medical professional, due to them just not having the education or awareness, gets dismissed or you are viewed as retaining fluid or being obese, that card triggers all sorts of emotional responses, fat bias, vulnerability, shame and self-blame that only adds to your fears of being rejected, worrying about having to deal and manage how others will respond and can lead to self doubt in how to manoeuvre through these situations.

Remember that doctors in training only spend around 15 minutes on the lymphatic system'

After many situations I found myself in over the years, I finally came to the decision that I am the expert in my own body, I am the one living in it day in and day out and I had to put my big girl pants on (literally) and stand up for myself!

Write it down, get informed, become your own strong self advocate!

SO WHAT CAN YOU DO?

• You armour up, know your value, believe in yourself!

• Know your rights, this leads to self-determination.

• Educate, learn and do your research, become well informed, YOU have choices.

• Self assess your needs, what do you want to achieve? Be prepared.

• Take a support person to your appointments, someone you trust, that can step in if needed and can take notes if this is required.

• Learn to become an assertive and clear communicator, this is at the heart of who you are.

• Take along information that you may need to share, links to websites, you-tube videos, podcasts etc

• Ultimately if your doctor is not prepared to support you or educate about these conditions then it is time for you to find one that does, it is that simple!, your health, your life, your future!

• Ask your Lymphoedema therapist to write a report of support to be given to your GP or maybe they can initiate contact with your GP.

• Get a Health Coach to support you and work alongside your GP, yes we can do that, you can build a team around you that you need!

If any of the above you connect with and I am sure you will relate, then I hope this is helpful, I stand strong in the importance of self advocacy and why you need to prioritise becoming assertive to get what you need, on the brighter side of this and I have to believe it is improving, but I feel we have to be a part of the solution to bring awareness and education about lymphatic disorders, we are at the forefront of bringing about this change with every interaction, every conversation, whether that be with a GP, a nurse, a physiotherapist, your Osteopath, your family, friends and co-workers, the knowledge you have, the ability to be assertive in your communication will allow space for yourself to own your current situation and I am right beside you in this, together we can find ways to support and empower you to be your best self advocate ever, you got this!

J

Explore what matters, living your life, loving your lymph

Beautiful Southland, New Zealand, Takitimu mountain range.