– Written by Vanessa Cullen
With a life history of several serious health conditions I have always been forced to engage with my own health. From an early age I’ve known no different than having to be hypervigilant about my blood and urine results, nutrition and food intake, sleep and stress, and physical activity. When I was diagnosed with PKD though I was certainly given a choice as to whether I should consciously engage with the condition or not.
I range between Stage 1 and 2 CKD and if I were not an endurance athlete I could risk ignoring the condition because it otherwise doesn’t greatly impact on my life (except for a few minor signs). I’ve observed that the question of engagement is a difficult one for those of whom PKD isn’t demanding attention – do you weather the emotional burden of engagement or ignore and distance yourself from the condition as much as possible? Let’s tease out the pro’s and con’s:
Option 1: To NOT Engage….
The emotional burden of consciously acknowledging PKD and engaging with your health is not to be underestimated. The disease can certainly feel like a bleak life sentence that you do not want to dwell on each day. It can lead to anxiety and depression. Considering avoiding alcohol, caffeine, salt and making other dietary changes can lead to fears that your enjoyment of life will be compromised and that you will become socially isolated.
Placing the importance of stress reduction, sleep and physical activity over the demands of study, work and family life can seem impossible. Taking on all this burden of conscious attention can seem like all too much trouble when you otherwise feel like life can go on as usual, just like everyone else in the population. Because everyone is going to die of something in the end anyway, right?
Engaging with your health might also mean going to see specialists and doctors more often and being sent for tests and medications. These are all expensive, time consuming and stressful. Worse still, being a part of research studies, focus groups, social media communities, advocacy initiatives, fundraising and attending information or support events will bring the early stage sufferer face to face with end stage sufferers and/or those whom have lost a loved one to PKD, and this can be VERY VERY confronting.
It is fair and reasonable to wonder why you would do all this to yourself and to choose either to not engage this deeply, or not to engage at all, for the sake of present emotional selfpreservation.
Option 2: To Engage….
For the sake of your own physical health it is generally considered best to have some level of engagement with your wellbeing and PKD. It is true that every member of society should engage with their general health and wellbeing in the interests of improved long term outcomes in longevity and quality of life. The benefits of prevention and early treatment of lifestyle diseases and other concerns is irrefutable and this is especially the case for those whose bodies are already burdened by an underlying condition such as PKD.
Research is moving quickly in the areas of potential treatment of PKD, dialysis alternatives, organ donation and artificial organs so you want to be in the best physical shape possible for these to become an option for you should you ever end up needing to choose any of these. And it’s never too early to take charge of your own life and start getting healthy.
Are those who might criticise or mock you real friends? Wouldn’t real friends want what is best for your health and look to support and include you? Wouldn’t they embrace your lifestyle changes as inspiration and motivation in their own life journey? Sometimes life calls us to put ourselves first and to lead by example.
Similarly, more and more studies are showing that EVERYONE is able to more effectively give the best of themselves to their studies, work and family life when they are at optimal physical wellness within themselves. Good health, nutrition, rest and activity leads to far less errors and accidents on the roads and at work, improved productivity, improved cognition and focus, improved culture and mood, improved communication and better interpersonal relationships.
It is worth seeking optimal general health REGARDLESS of whether or not you have PKD. The only reason you might be the odd one out in trying to be healthier is because obesity, tiredness, stress and malaise has become the norm – the world we all inhabit is often FAR sicker than you are in early stage CKD. But you CAN choose not to go with the flow.
PKD sufferers have better outcomes when high blood pressure is detected and treated early, same goes for brain aneurysms and other elements of the condition. Yes this is all scary and we’d rather not know about it but we/you CAN choose how much you wish to know and how far you wish to engage. It’s your health and your body – don’t let doctors push you around if you feel uncomfortable. You call the shots and progress when you feel ready to engage. Resilience isn’t built up overnight. It takes time.
For the sake of us all – research and fundraising.
Did you know that there are lots of research initiatives going on around PKD and the related conditions/issues often experienced by PKD sufferers, and that many of these studies are conducted online or privately, and are interested in specifically recruiting early stage patients?
By choosing to engage in research studies and focus groups you can benefit from receiving the most current breakthrough information, free tests and screenings, access to potential free treatments and support, and some studies will even provide a small cash or voucher cover. The rigorous rules around research and human trials in Australia ensure that you will be treated with dignity and sensitivity, never be subject to anything invasive without your prior informed consent, that adverse effects are very rare, and that you can opt out at any time should you feel uncomfortable about anything.
Most importantly, you can guarantee that your involvement in research studies and focus groups will be part of the key to finding treatments, improved services/care/outcomes and perhaps even a cure for all of us. Direct fundraising isn’t for everyone because it’s hard not to feel uncomfortable asking for money. However there are many options for various degrees of engagement, ranging from direct approaches for philanthropy, to conducting your own event or activity, through to simply raising awareness of PKD itself and the work and fundraising needs of PKD Australia as a charity.
Again, you are free to choose your level of involvement, but remember that the groundwork for services and treatments you may rely upon in the future, needs to be laid now. So even the smallest contribution is a good start.
For the sake of us all – advocacy.
Hardly anyone has heard of PKD yet it is quite a common condition. Without PKD sufferers standing up, telling our stories, being involved in conversations and having our voices heard, we will not receive the recognition, financial backing and priority of outside investment that we need to advance services, research and patient outcomes.
Being an advocate is the deepest level of engagement and will bring you into contact with people in all stages of the disease and all forms of experiences, so it is certainly not for the faint hearted. I wouldn’t suggest joining social media groups around PKD in terms of advocacy because these are particularly confronting and not really the forum for significant external change or influence, but actively engaging with the work of PKD Australia and attending broader patient engagement and medical forums is certainly the way to go.
Being an advocate is an act of investment in your own long term welfare but also particularly for the generations to come. An effective advocate is someone who surrounds themselves with a good support network that understands the emotional burden they have chosen to carry, someone who can allocate the time and resources to doing background reading, staying up to date, speaking out and attending events, and someone who is as well and strong within themselves as they can be, in order to be able to give their best to serving the PKD community as a whole.
That doesn’t mean that you need to be in top notch condition to be an advocate, it simply means that you need to be engaged with your own health and wellbeing as your basis to start.
And so we have come full circle looking at the pros and cons of actively engaging with your own health as an early stage PKD sufferer. I hope this article will help you make an informed choice as to the degree of engagement you will choose now and into the future. Remember that you never have to be engaged 100% all of the time and it is fine to be more or less engaged at different levels at different periods, according to what best fits with your situation. Listen to your body, be kind to yourself and for more info contact PKD Australia.