The quest for information regarding your illness or injury can become all-consuming, but all the information in the world may not give you certainty.
However, Google becomes your favourite aunt/uncle. You speak to a nurse. You find a charity that supports people living with the condition/illness/injury’s impact. You read books. You might even get a second opinion from another medical specialist. You wonder whether you have answered every question and dealt with all the possibilities.
It’s quite normal that people seek as much information as they can in this situation. I’ve been there. Sometimes you have to be in information gathering mode in order to deal with the changes dropped into your lives. Seeking and gathering information to deal with these issues is important and necessary.
But there can be a downside
You can end up scaring yourself to the point you experience a lot of anxiety, cannot sleep, you do nothing because everything feels overwhelming and/or hopeless, or you feel like your life resolves around searching for info and you feel constantly disappointed. When the quest for information becomes all-consuming in this way, then that is when we need to ask ourselves several questions:
- What information would be helpful to my situation?
- Do I have the right information?
- How much info is too much?
- Is it not a case of having too much information but how I am taking it in and interpreting or applying it?
Driving this can be our search for ‘why’
Sometimes we want The Answer. We want to know WHY the illness or injury happened. This motivation is very often the driving force behind the search for information. Which is understandable.
If we know ‘why’, then we’ll know what to avoid so it doesn’t happen again
Having a flare, relapse, the cancer returning, or having another heart attack, stroke, etc.
We also want to know how to fix it
This is natural. We humans are meaning-making problem solving beings. We want to make sense of what is happening to us. Information helps us do that. Information, meaning and problem solving gives us certainty. Certainty gives us a sense of being in control
But sometimes there is no answer. You may hear nurses/doctors say, ‘We don’t know why it happened. The cause is idiopathic.'(Idiopathic means unknown.) Or in relation to the prognosis, you hear them say, ‘We have to wait and see.’ You may often hear the words ‘unpredictable’ and ‘uncertain’ in relation to recovery.
Living with no answers and ongoing uncertainty is not easy
Sometimes it is not a case of having a lot of information, but how we take it in and apply it to ourselves. Having a lot of information can be very helpful. There is that saying that ‘knowledge is power’. But if you interpret or apply the information in such a way you are incredibly unhappy, or you don’t do anything with it, then something else is needed.
If all the information in the world may not give you certainty, then what’s the alternative?
There are several alternatives. They may not always be easy. There is no magic wand. (It’s ok to hold on to that possibility, but hold that possibility lightly.) A learning curve is involved.
Determine what it is you want to know and how much information you are prepared to take in
Every person is different. Some people do not want to know anything and just do what the doctor says and others want to know everything. Others fall in between.
If you are speaking to people, let them know what you would like to know. Going into appointments with a list of questions you have will help. And let them know what you may not be ready to hear just yet.
Remind yourself to hold lightly what you are reading or listening to
If you continue searching and gathering information, remember that you do not have a professional sitting next to you to help you put what you are reading or listening to into the context of your or your loved one’s medical case. What you are reading or listening to are possibilities which may or may not come to pass, particularly as an illness/condition can manifest itself differently from person to person. The information might not even apply to you.
If questions occur to you, write them down and note what you read that inspired the question. Take the questions to your next appointment with the medical specialist. They can help you determine what information applies to you, what does not, and how to interpret it within the context of your situation.
Speaking to others in the same situation can be very helpful. It creates a connection so you know you and your loved one are not alone. And in these moments of connection, the focus is often on sharing experiences and having the answers can cease to matter.
There may be questions you will not get an answer to
The doctors do not know everything, as much as we would like them to. Doctors and nurses often enter their professions to help others. They do not like it any more than you when they do not have an answer to help you. They also cannot make promises as an illness/condition or the impact of an injury can change in ways they cannot predict.
There may be ongoing uncertainty and unpredictability. The following may come across as trite, a platitude, but it is not intended that way.
There is a paradox regarding uncertainty – It is certain that there will always be uncertainty.
So embrace the here and now, what you are experiencing and…
Trust yourself that your knowledge will increase and it will help you
Even though all the information in the world may not give you certainty, your own experience can.
Next month, you will know more than you do now. In six months, you will know even more. Next year, you will look back and see how far you have both come and be amazed.
That knowledge comes to you through your day-to-day experiences. Through the experiments you try – Will the angina kick in if I ride the exercise bike? Will I have fatigue tomorrow if I go to this party tonight? Via discussions with medical and healthcare professionals, and others going through the same situation. By remaining open to receiving your day-to-day experiences as they are, as they happen. Through adjusting, adapting and evolving.
Over to you
Are you someone that likes to gather as much info as you can or are you happy to let the doctors tell you what they feel you need to know? What happened when you felt you received too much information? How do you live with not having answers and uncertainty? Share your experiences with us by leaving a comment.
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© Copyright Barbara Babcock 2015