When Prevention Is Not An Option
When Prevention Is Not An Option
How to approach being diagnosed with a chronic disease.
We don’t prevent disease. We delay it.
When it comes to the non-communicable chronic medical conditions that are likely to lead to our death, such as cardiovascular disease, cancer and dementia, the real goal is to delay their onset as long as possible. Not to prevent them entirely.
In longevity research, these are the healthy centenarians who tend to get these conditions 20 to 25 years later than everyone else1. That is why they live longer.
But they still get them eventually. Just not at a younger age.
Given a long enough time horizon, everyone is likely to develop at least one of these conditions.
A common frustration with a focus on prevention is the story of someone who did everything right and still got a chronic medical condition prematurely.
Does that mean that we should abandon all efforts to prevent these conditions?
No. Of course not.
The issue here is separating possibility from probability.
It is entirely possible that even after doing everything right from a lifestyle perspective, you can develop a chronic medical condition earlier than anticipated.
However, on average, it is highly probable that you won’t.
This is always a game of odds. We can never guarantee an outcome, but we can stack the odds as much as possible in our favour.
If you develop one of these conditions, it is not about assigning blame for not being perfect with respect to lifestyle.
It is not your fault. But it is your problem.
So when a chronic medical condition does arise, how should we approach things?
My fallback position every time is to look at things through the lens of:
Lifespan, Healthspan & Soul Span.
What will this diagnosis mean in terms of my lifespan, and what are my goals here?
What will it mean for my health span with respect to how I move and think?
What will it mean in terms of soul span; how I derive meaning and purpose in my life?
This approach is not the only way to start, but it is an excellent framework to begin thinking about your goals and concerns in these areas.
Knowing these goals and concerns upfront will make all the following steps much easier.
The problem is that most people choose to be passengers regarding their diagnosis. And if that is what you want. That’s ok too. Just be clear about it at the outset, and don’t be frustrated halfway through the journey when you don’t feel you have an understanding of what’s happening.
I would strongly advocate becoming an active participant when it comes to the management of a medical condition.
In the end, you have the most to gain and the most to lose.
So being actively involved is vital.
Context Is Key
“A little learning is a dangerous thing.
Drink deep, or taste not the Pierian Spring.”Alexander Pope
While I agree with Mr Pope that surface knowledge can be dangerous, it doesn’t mean that getting familiar with basic concepts isn’t helpful. When you are diagnosed with a medical condition, doctors will typically start to use medical jargon, and it can feel like they are speaking a different language. Getting familiar with some of the terminology is helpful if you want to maximise your discussions with your clinical team.
Doing a Google search on your condition is to be considered like any tool. When used appropriately, it can be beneficial. When used incorrectly, it can be hazardous.
Fire changed the course of human history, but when misused, it still burns down buildings. Fire is a tool. The internet is a tool. Use them wisely.
When searching on the internet, make sure you stick to reputable websites to start with. Anything produced by governments or large hospital systems are a great place to start. As you become more familiar with your condition, there is scope to widen the net of what you consume but to start, stick with the fundamentals. Patient support groups are an invaluable resource. Clinicians are fantastic at deciding on the treatment plan, but patient support groups can provide great tactical advice, such as where the best wig makers are in the area if you are likely to lose your hair during treatment.
If you are lucky enough to know someone with a relevant healthcare background, it might be helpful to have a discussion with them. A nurse or doctor familiar with your condition will be an excellent sounding board for the questions you will naturally have. They will also be able to contextualise information you might have encountered online. They can explain if what you are looking at online refers to you or not. You will probably be more relaxed asking someone like this questions and they will likely have more time to talk.
Context is king.
Use your allies wisely.
The Consultation
When it comes to the clinician looking after you, do not be afraid to ask if they have a special interest in the area that specifically affects you and, if not, whether a colleague might be a better option. For example, all cardiologists are comfortable managing conditions such as atrial fibrillation, but certain cardiologists make it their entire career. It doesn’t mean that the first cardiologist won’t do a good job, but understanding their skill set is worthwhile.
Do not be afraid to ask for a second opinion when it comes to a complex medical condition. How we manage medical conditions is largely rule-based, but certain clinicians have different perspectives or are trying to optimise for different variables. A great clinician will have no issue with you obtaining a second opinion.
Although a second opinion can be valuable and working with a dedicated specialist can be helpful, it is essential to stick with the person you trust. In sports, this is known as ‘One Voice’ where only the Captain calls orders to the team. When you have landed on someone, you trust. Stay with them. From this point forward, additional opinions can be more unhelpful than helpful.
Tactics Of An Insider
There are ways to get more out of each consultation you have with your clinician.
Bring someone with you. You will forget the majority of what you are told. Two brains are better than one.
Ask to be copied on the medical note. I do this for all of my patient’s correspondence. This is a great way to have a reminder summary of what happened in the consultation. And remember, it’s a letter about YOU. At a minimum, you should get to see it.
Send questions in advance. It’s important to have a list of questions you want to be answered but springing 50 of them on your clinician during the consultation is not helpful. Consider the key questions you want to be addressed and send them in advance. Most clinical visits are frustratingly short, so be focused on the priority issues.
For a first visit consultation or one where a significant issue is to be discussed, ask if it is possible to book two consultation slots back to back. This may not be possible; if you see someone privately, you will have to pay twice as much. But if you want extra time, this is a valuable strategy to deploy occasionally. Sometimes even asking to be last on the clinic list can mean that running over time may be less of an issue for the clinician.
In terms of treatment, ask what the clinician’s goals are. To extend lifespan, improve quality of life, reduce the risk of a specific event? The clinician’s goals may align with your own but may not. Or at least the order of priority of these goals may not align. Be specific with what you are hoping to achieve and if that is possible.
The Goalposts Move
Over time your goals and priorities will change. As your condition evolves, so will your expectations around lifespan, health span and soul span. Remember that there are always goals to work toward. Even when a medical condition is at a point where time is very limited, there are always goals. Be flexible.
Adapt to what your new goals are. For some, it will be about making a bucket list trip to a far-off land. For others, it will be getting to pet their dog once last time. We can always have goals. We need to recognise when they change.
The best strategy is to delay the onset of a medical condition as long as possible. But when the inevitable does arise, always know there is a lot you can do. Become an active participant in your care. How things work out will affect you the most.
You are not a passenger.
It’s time to get engaged.
Disentangling the Roles of Disability and Morbidity in Survival to Exceptional Old Age. Arch Intern Med. 2008;168(3):277-283
Great points.
As someone who has lived with a heart failure diagnosis for 10 years due to a delayed SCAD diagnosis, I would also add that finding the right medical team important, especially those who communicate well with you the patient, and who you have faith in, or vibe well with, as often that positive doctor patient relationship is the seed from which patient empowerment begins it's growth.
Also if patients can reach out to other patients in the same boat, it will offer support, reassurance and inspiration, especially in the darkest days when we all need others to help us through.
Finally, a diagnosis is about the head as much as the body. Continuing investment in your mental health a vital part of living with the struggles of any condition.