This post was inspired by listening to a BBC 5Live radio programme yesterday on the Walton Neuro Centre (Walton Centre NHS Trust) and the work it does treating and rehabilitating people with acquired brain injuries and neurological conditions. You can listen to the programme here; it is available for another 29 days from 4 February 2015.

If you or a loved one have been recently diagnosed with a long-term condition or illness or have experienced a life-changing injury, the quest for information regarding the condition/illness/injury can become all-consuming. 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 is quite normal that people seek as much information as they can in this situation. Sometimes you have to be in information gathering mode in order to deal with the changes dropped into your lives. You may have to find alternative housing, deal with the banks to get access to a loved one’s bank accounts so you can pay the mortgage and bills, deal with insurance companies, learn exercises for a rehabilitation programme, and more. Seeking and gathering information to deal with these issues is important and necessary.

At times the downside of gathering lots and lots of information about the condition/illness/injury itself is when it leads to scaring yourself to the point you experience a lot of anxiety, cannot sleep or you do nothing because everything just seems hopeless. When the quest for information becomes all-consuming in this way, then that is when we need to ask ourselves several questions:

  • 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?
  • Do I have the right information?

Possible Answers

Sometimes we want The Answer. We want to know why the condition/illness/injury happened. We want to know what to avoid so it does not happen again (having a relapse, cancer returning, having another heart attack, etc.). We 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 hear the words ‘unpredictable’ and ‘uncertain’ in relation to recovery.

Living with no answers and ongoing uncertainty on a daily basis over weeks, months, even years 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 do not do anything with it, then something else is needed.

Is there an alternative?

I think there is. And there are several alternatives. But 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.) There is a learning curve involved.

Determine how much information you want. Every person is different. Some people do not want to know anything and just do what the doctor says. Some want to know everything. Others fall in between. If you are speaking to people, let them know what you would like to know. Having some prepared questions will help. And let them know what you may not be ready to hear just yet.

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. Remind yourself to hold lightly what you are reading or listening to. 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 time and again has proven to be incredibly 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 in this

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.

Knowledge is out there. It 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?). Through the discussions you have with each other, the medical and healthcare professionals, and others going through the same situation. Through 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? If you have found a way to live with it, what enabled you to do that? Share your experiences with us by leaving a comment.

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© Copyright Barbara Babcock 2015

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