This Fabry Awareness Month, we are featuring a range of articles from guest bloggers describing their relationship with Fabry disease. This week, we have Claire O'Meara who shares her tips for navigating the health system when you have a rare disease.
A patient's perspective
I may seem a little obsessed, maybe I am, but when you are fighting for your life, for your health, you’ll leave no stone unturned. I’ve learnt how to best navigate the Health Care system after 9 years. I've felt frustrated and at times angry, especially when I am trying to do all I can outside of my treatment. But, I've processed that frustration and learnt that getting annoyed and angry does you no good, so you’ve got to learn to navigate and best manage things.
Helpful tips
You are fighting for you, even on the tough days nobody cares as much about you as you!! And that's not a selfish thing or self centred – you have to learn to put yourself first.
As a patient you can very easily slip through the cracks in the healthcare system. I know it shouldn’t happen but it does and it’s more common than not.
The consultants, the doctors, the nurses, they see that many patients daily you are just a number – don’t assume they will know everything about you, that they will know your medical journey and definitely don’t assume they will have all your medical notes.
Keep your own medical files and keep track and on top of everything. I am lucky to have some understanding and training in whole health / functional health and how the NHS works through training I've attended. One app I highly recommend is Airmid Cares through the NHS and has all my GP history with all test results and space for me to add hospital letters my own notes.
Don’t be scared to be heard. At first I was always just accepting or waiting for things to be done, but then it didn’t happen so I learnt to fight but in a polite and respectful way. I fought for what I thought was right for me, I questioned things that I deemed not the right thing for me, yes at times I felt like a right pain in the butt to people but so be it. I chased secretaries for copies of paperwork and appointments, I learnt who all my consultants PAs were. Please don’t ever just sit back and wait for things to happen.
Remember you are fighting for you and your health!
Help yourself
Do all you can outside of the NHS because if you are wanting something off them remember to give something to them.
There are so many things you can do to help yourself were possible:
Eat well – eat good nutritious, nourishing foods that work well for you and your illness
Exercise even if it's just walking and a few steps a day or movement some stretching sat down
Practice mindfulness
Get in nature as much as you can
Manage stress
Get a good support network around you and never be scared or too proud to ask for help
If you can afford it, work with a functional practitioner to get everything outside of your disease working optimally.
Quit smoking
Manage alcohol intake
Manage sugar intake
The NHS is amazing at treatments, surgery, emergency care and life saving operations and the treatment I receive on a weekly basis I am so grateful for, this treatment is helping me stay alive at a very hefty cost and for that I am grateful.
Claire
If you feel moved by Claire's story please share it and help to raise awareness of Fabry disease and what life with Fabry disease is like.
If you need any help or support living your life with Fabry disease please contact Donna, our Support and Advocacy Officer dedicated to supporting people with Fabry disease.
You can read more about Fabry disease and support we offer here.
