Emergency protocol for chronic illness: what if you cannot respond?

PART 1: What if you can't tell it yourself right now?

Why it can be wise to think about emergency information in advance

Most people can tell themselves what is going on when something happens.

“I have diabetes.”

I faint more often.

This is a familiar attack to me.

Please don't touch me.

“Call my partner.”

But what if you can't do that at that moment?

There are countless situations in which someone is temporarily unable, barely able, or unreliably able to explain what is wrong.

You may lose consciousness or faint regularly. You may have an epileptic seizure, experience hypoglycemia or hyperglycemia, dissociate, enter a psychotic state, or experience loss of function due to, for example, FNS. You may be temporarily unable to speak or respond due to neurological problems. And there are many more physical, neurological, and psychological situations imaginable.

Sometimes something like that takes a few minutes. Sometimes much longer. For some, it happens regularly, for others only very occasionally.

The cause can be completely different.

The most important question remains the same:

If you can't express it yourself right now, how does anyone else know what you need?

Someone else doesn't know what is normal for you.

For a bystander, a situation can be quite intense or frightening, while you might know exactly: this happens to me often and normally it passes on its own.

Conversely, something might look relatively harmless to an outsider, while you actually need to act quickly.

A stranger cannot know that difference.

But even someone who knows you well does not automatically know what to do in an emergency situation.

Perhaps you have already explained to your partner, housemate, or a friend several times what needs to be done during a specific attack or outburst.

That does not mean that the person can calmly reproduce everything from memory at the moment itself.

People can be startled. They can freeze. They can have doubts. They can forget exactly what you agreed upon.

Knowing what can happen and actually

Being in the middle of something are two different things.

That is precisely why it can help to record important information and agreements in advance.

What is a personal emergency protocol?

The word 'emergency protocol' might make you think of a six-page official document full of complicated medical terms.

That is not necessary at all.

Essentially, a personal emergency protocol means thinking in advance about what needs to happen when you are unable to indicate this yourself at that moment.

For example, start with one question:

If I can't explain anything anymore from this moment on, what does anyone need to know about me?

Next, consider questions such as:

• What can happen to me?

• What does that look like to someone else?

• What can I still do and not do myself during such a situation?

• What should someone do?

• What exactly should someone *not* do?

• What is a familiar or usual situation for me?

• When does a situation deviate from that?

• When should professional help be sought?

• Who can be called?

• Is there important information someone might need?

• Where can someone find that information?

• Are there other circumstances that need to be taken into account?

For some, the most important information fits on a small card. For others, a more extensive protocol is preferable.

There is no universal emergency protocol that works for everyone.

Above all, it must suit you and your situation.

Make a clear distinction between normal and abnormal

This is perhaps one of the most important components of good emergency information.

Suppose you regularly experience a specific attack or loss of function, and that an ambulance is normally not needed. In that case, it may be important for others to know.

But just write down:

Do not call 112.

is not sufficient.

• Because what if, while falling this time, you land on the ground headfirst?

• What if the situation lasts much longer than is usual for you?

• What if you react differently than normal?

• Or what if someone simply cannot judge whether this is still a familiar situation for you?

Therefore, make a clear distinction between:

This fits my usual situation as…

and:

Do call for medical help if…

What this entails is different for everyone. Where necessary, you can determine medical instructions together with a healthcare provider.

A personal emergency protocol must never stand in the way of necessary medical assistance.

Also tell someone what they should not do.

In an emergency situation, we automatically think of taking action.

Call someone. Grab something. Call an ambulance.

But sometimes it is at least as important that someone knows exactly what not to do.

Maybe someone shouldn't touch you. Maybe the environment needs to be kept quiet. Maybe multiple people shouldn't speak to you at the same time.

Perhaps there are certain actions that actually have the opposite effect in your known situation.

You can make that clear in advance as well.

The less someone has to think of or improvise on the spot, the easier it becomes to follow your agreements.

Make it as easy as possible

An emergency protocol can be perfect in content and at the same time completely unusable.

If someone has to read three pages of text before it becomes clear what to do, it misses the mark in a stressful situation.

Therefore, keep the information someone needs immediately short, clear, and concrete.

A reader must be able to get quick answers to questions such as:

What is likely happening here?

What should I do now?

What should I not do?

When should I call for help?

Who can I call?

Where can I find additional information?

The goal is not to get as much information as possible on paper.

The goal is that someone can trade with it.

Not everyone needs to know everything about you.

Making emergency information available does not automatically mean that you have to make your entire medical history available to every passerby.

Therefore, also consider privacy.

A casual bystander likely needs different information than a professional care provider.

You can therefore work with different layers of information.

The information someone needs immediately can be made available briefly and simply. You can keep more personal or medical information separate for situations where it is actually needed.

However, you have to remain realistic.

If you carry information with you or place it somewhere accessible, you can never fully guarantee that only the person for whom that information is intended will view it. For example, a bystander trying to help might also come across more extensive information while searching.

Therefore, consciously consider what information you make available where.

A good starting point is:

Enough information to act safely, but not automatically more information than necessary.

An emergency card that no one finds is of little help.

You can have the best emergency information in the world, but if no one knows it exists, it is of little use to you when you need it.

Recognizability and findability are therefore at least as important as the content.

Make it clear that emergency information is available and where someone can find it.

That can be done very easily.

For example, 'EMERGENCY INFORMATION' can be clearly displayed on a bag. An assistive device can refer to a designated location. And for an assistance dog, the vest can indicate where the handler's emergency card is located.

Think of texts like:

Emergency card in small bag on hip.

or:

Emergency information in backpack.

Then someone doesn't have to search through all your belongings first in the hope of accidentally finding something useful.

At home, too, you can use a fixed, recognizable spot and ensure that the people around you know where it is.

Actually, you want someone to discover three things as quickly as possible:

There is emergency information.

I can find them here.

This is what I have to do with it.

Important information may be placed in multiple locations

For important emergency information, it can actually be wise to have certain information available in multiple logical places.

A ticket can get lost.

Your phone might be dead.

Your bag might be just somewhere else.

At home, the person you find might not know in which cupboard you keep your extensive information.

Of course, you do not have to provide your full medical information everywhere.

Concise, important information can appear in multiple places, while more extensive information remains available in a fixed location.

Always consider two questions while doing so:

Where would someone likely look?

and:

How can I ensure that someone has to search as little as possible?

But there is almost always someone with me.

Perhaps you live with a partner, family, housemates, or support staff. Perhaps you almost always go outside with someone.

Then you might think: if something happens, surely there is someone with me?

But 'almost always' is not the same as 'always'.

Even when you live together, there are times when others are not at home, are sleeping, showering, or busy with something else. And even when you are out together, someone might be in the restroom, getting something from the car, or simply standing somewhere else.

But there is a second reason why emergency information can be useful even then.

Even when someone is standing next to you, that does not automatically mean that they know what to do at that moment.

An emergency situation can also catch someone who knows you very well off guard.

Your partner might be startled. A housemate might have doubts. A friend might suddenly no longer remember exactly what you explained to him months ago.

Clear emergency information can therefore also be a tool for people in your own network.

That way, they don't have to know everything by heart in a stressful situation. They can fall back on agreements you made earlier, at a quiet moment.

Test your protocol on someone who doesn't know it.

You have created your emergency protocol, read it back, and think:

Perfect. Completely clear.

But you are actually not the best person to judge that.

After all, you already know what you mean.

Therefore, have your emergency information read by someone who knows little to nothing about your situation. Preferably also by someone without a medical background.

Give that person your card or protocol and ask, for example, the question:

Suppose you find me like this and I can't tell you anything. What would you do now?

And then let that person search, read, and explain for themselves.

• Can that person quickly find what he needs?

• Is it clear what needs to be done?

• Is it clear what exactly should not be done?

• Does anyone understand the distinction between your usual situation and a situation where medical help is needed?

• Can that person find additional information?

• And above all: what questions arise?

If multiple people misunderstand the same instruction, that is valuable information. In that case, the instruction is apparently not yet clear enough.

Ultimately, you don't write an emergency protocol for yourself.

You write it for the person who needs to understand it when you cannot explain it yourself.

Check not only your data, but also yourself

An emergency protocol is not a document that you create once and then forget about for years.

Your situation may change.

Phone numbers change. People enter or leave your network. Appointments with healthcare providers may change. You may receive different aids. Medication may change.

But you too can change.

Perhaps an episode looks different nowadays. Perhaps during such a moment you can no longer do something that you used to be able to do. Perhaps new signals have been added. Perhaps something lasts longer or shorter nowadays. Or something that used to help no longer works.

Therefore, make it a habit to regularly review your emergency information.

I do that myself, for example, once a month.

In addition, I do not only check:

Are my details still correct?

but also:

Does what is written here still match how things are going for me right now?

It may also be useful to note on a more detailed protocol when you last checked it.

Think carefully about information that changes rapidly.

Not all information is equally suitable for static placement on an emergency card.

A medication list, for example, can contain incredibly important information. However, when your medication changes regularly, a printed list can also quickly become outdated.

That is why I personally choose not to include a complete medication list on my emergency card. My medication can sometimes change from week to week, and I want to prevent someone in an emergency situation from relying on outdated information.

For someone who has been using the same important medication for years, that consideration can, of course, be very different.

You can also choose to refer on your emergency information to the place where an up-to-date medication list is available.

Ultimately, it is not about how much information you can gather.

The point is that the information someone relies on is actually correct.

More information is not automatically better information. Up-to-date, clear, and usable information is.

Just start with one sentence

A personal emergency protocol doesn't have to be perfect right away.

Start with one sentence, if necessary:

If I can't tell it myself for a moment, someone needs to know about me that…

And keep writing.

• What can happen?

• What would a stranger see?

• What should someone do?

• What absolutely not?

• When is something normal for you, and when is it no longer?

• Who needs to be called?

• Where can the information be found?

• Who in your circle knows about this?

• And would someone who doesn't know you at all understand what you have written down?

From there, you can increasingly tailor your emergency information to your own life.

After all, an emergency protocol is not about constantly focusing on everything that could go wrong.

It is about being able to record important information and decisions at a time when you can think things through calmly and explain what is important to you.

So that, if there comes a moment when you can't tell it yourself, you have already done so a little bit beforehand.

This is part 1 of a four-part series.

This blog forms the basis of a four-part series on personal emergency information and emergency protocols.

In the following parts, we delve deeper into practical applications. We look at organizing an emergency protocol at home and with your network, at emergency information and emergency cards for on the go, and at the role of an assistance dog within an emergency protocol, including what you can do when the first agreed-upon action is not possible.

After all, a good emergency protocol looks different for everyone. The most important thing is to think about it in advance, tailor it to your situation, and ensure that the information is usable at the moment you are unable to articulate it yourself.