The Difficulty of Invisible Disabilities

Introduction

"You look fine, are you really struggling that much?"

"If you can hold a normal conversation, surely you don't need any special accommodations?"

"Unless I explain my illness, people won't understand. But I'm also afraid of them knowing."

People with mental disabilities often face these kinds of difficulties.

Unlike an injury, the wounds are not visible.

Unlike a fever, it is not always possible to express the pain with just a number.

Sometimes they are talking with a smile.

There are days when they can go shopping.

Sometimes they can participate in work or school for short periods.

Seeing only those moments, people around them may judge them by saying, "They look better than I thought," or "Maybe they are okay now."

However, the appearance seen from the outside is not the same as the symptoms the person is experiencing on the inside.

After managing to behave normally in public, they may return home and be unable to move.

They may continue a conversation while hiding their anxiety, only to be completely exhausted the moment it ends.

The difficulty of invisible disabilities is not just that they are hard for others to notice.

It is being asked to explain yourself to get your pain believed.

It is having to disclose things about your illness you don't want to talk about just to receive accommodations.

It is being thought that you don't need support when you show a healthy side.

Conversely, it is having your abilities underestimated once you disclose your diagnosis.

The individuals live amidst these contradictions.

In this article, we will consider the difficulties caused by the invisibility of mental disability symptoms from the perspectives of the individuals themselves, their families, supporters, workplaces, schools, and the community.

Being invisible is different from not existing

In mental disabilities, changes can appear in mood, thinking, anxiety, motivation, concentration, susceptibility to fatigue, and sleep.

For example, in depression, not only does one feel down, but one may also experience a lack of energy to start things, difficulty making decisions, or intense fatigue.

In anxiety disorders or social anxiety disorder, even if one appears calm to others, the person may be experiencing persistent anxiety about failure or being judged.

In panic disorder, even if one looks normal during times when no attacks are occurring, the person may avoid trains or shops due to the fear that "it might happen again."
In obsessive-compulsive disorder, behind actions that may look meticulous from the outside, the person may be unable to stop checking or washing their hands, consuming a great deal of time.

In schizophrenia, even during periods when symptoms appear stable, fatigue or difficulty concentrating may remain.

In bipolar disorder, the appearance seen by others can change significantly between depressive states and periods of elevated mood.

Mental disabilities do not always manifest the same symptoms.

Being invisible does not mean there are no symptoms.

There is also a difference between what one can do for a short time and what one can continue to do stably every day.

Appearing healthy becomes a burden

Some people with mental disabilities hide their symptoms and act as if they are fine so as not to worry those around them.

Putting on a smile at work.

Talking along with friends at school.

Answering "I'm fine" in front of family.

Even at the hospital, they may be unable to explain well and say, "Nothing has changed in particular."

This does not mean they are lying.

They don't want to be seen as weak.

They don't want to lose their job.

They don't want friends to distance themselves.

They don't want to make their family anxious.

They hide their pain for various reasons.

However, it takes effort to appear healthy.

They adjust their facial expressions, keep their anxiety hidden, and continue conversations while worrying about the reactions of those around them.

Even if they were able to behave normally outside, they might have used up all their energy for the day to do so.

It is important not to assume that appearing healthy is proof of recovery.

The exhaustion of having to keep explaining symptoms

With invisible disabilities, one may have to explain their condition every time they need to receive necessary support.

Why they cannot participate from the morning.

Why they want to avoid crowded places.

Why sudden schedule changes are difficult.

Why short breaks are necessary.

Even if these are daily struggles for the person, they must explain them from scratch to someone they are meeting for the first time.

Even when they explain, they may be told, "Everyone gets anxious," or "Everyone gets tired."

They may be asked for more detailed reasons, and feel they have to disclose things they don't want to talk about, such as their diagnosis, treatment, medication, or past experiences.

Having to constantly prove one's pain is a huge burden.

Moreover, the worse they feel, the harder it becomes to organize their thoughts and explain.
It is important for those providing support not to take the person's inability to explain as proof that they have no difficulties.

It is necessary to allow them to choose easy ways to communicate, such as notes, emails, or having a supporter present.

The dilemma of whether to disclose or hide the illness

Precisely because mental disabilities are invisible, there are situations where the person must choose whether or not to disclose their illness.

If I tell my workplace, it might be easier to receive accommodations.

But will they stop trusting me with work?

If I consult with the school, they might be able to adjust how I participate.

But will my friends or other faculty members find out?

These are the anxieties they face.

Who, how much, and how to tell others about an illness or disability is a very personal matter.

You do not have to disclose your entire medical history to request accommodations.

"I can participate more stably in the afternoon."

"I get confused when there are multiple verbal instructions, so I would like to confirm priorities in writing."

"I would like to rest in a quiet place when my physical condition worsens."

Like this, there are ways to communicate what you are struggling with and what adjustments you need, rather than just the diagnosis.

It is also important not to spread information that those around you do not need to know.

It is necessary to confirm the person's consent and consider support while protecting their privacy.

Fluctuations in condition can lead to a loss of trust

With invisible disabilities, fluctuations in condition can also lead to misunderstandings.

They were able to come to work last week, but they are absent this week.

They were talking to friends yesterday, but today there is no reply to messages.

They couldn't move in the morning, but they were able to go shopping in the evening.

Seeing such changes, those around them may doubt, "Are they really feeling unwell?"

However, the symptoms of mental disabilities and the energy available change depending on sleep, fatigue, tension, human relationships, environment, medication, and overlapping schedules.

Just because you could do something once does not mean you can do it the same way every time.

Also, just because you can do one activity does not mean you have the energy left for another.

Going to a shop near home for a short time and going to work at a set time to continue making judgments and dealing with people for hours are different burdens.

It is important not to view changes in condition as contradictions, but to look at under what conditions symptoms become stronger and what methods make it easier to participate.

Being family doesn't mean you know everything
Because family members are close to the person, they are in a position to notice changes easily.

On the other hand, there are parts that are invisible precisely because they are family.

If they only see the person lying down at home, they may not know how much energy the person is using outside.

Conversely, because they can talk energetically at home, it may be hard to imagine that they are struggling at work or school.

"But you're normal at home."

"You were able to go out, so aren't you okay?"

Such words can make the person feel that they are "not being believed."

It is natural that family cannot understand everything.

What is important is not to assume you understand, but to listen to what the person has to say.

"Is there a difference between when you are outside and when you are at home?"

"Which situation is the most difficult?"

"Is it better for me to listen now? Or should we think of a way together?"

By confirming in this way, it becomes easier for the person to talk.

In the workplace, it is easy to be evaluated only by results

In the workplace, work results and attendance are emphasized.

Therefore, difficulties caused by invisible symptoms are sometimes treated as problems of ability or motivation.

Concentration drops and tasks take time.

Anxiety is strong, and phone support is difficult.

Confusion due to sudden changes in instructions.

Easily fatigued in crowded places.

Need for medical visits and rest.

If these are left solely to the person's own efforts, they may overexert themselves, leading to leave of absence or resignation.

What is needed in the workplace is not to decide on responses uniformly based on the diagnosis.

Clarify the priority of tasks.

Give instructions one by one.

Decide on a contact person for consultation.

Prepare a place where they can rest quietly.

Adjust arrival/departure times, breaks, and workload.

Regularly check the situation with the person.

Reasonable accommodation is not about giving special treatment only to that person.

It is about discussion and adjustment to reduce the difficulty of working caused by the disability and to make it easier to demonstrate the abilities they have.

In schools, it is easy to be asked for explanations only after trouble occurs

In schools, too, support can be delayed because symptoms are not visible.

Because they sit quietly during class, it is thought there is no problem.

The condition is noticed for the first time only after absences increase.

Because they were able to take the exam, it is thought they can participate in daily classes.

Because they can talk to friends, it is judged that they have no trouble with group life.
However, the person may be enduring the stimulation of the classroom and interpersonal anxiety, and may be unable to move once they get home.

In schools, it is important to check not only absences and grades, but also in what situations the person uses their energy and what they are struggling with.

Adjust school arrival times.

Participate in a separate room or online.

Change the method of presentation.

Discuss the amount of assignments and deadlines.

Decide on a person in charge they can talk to with peace of mind.

Review accommodations once decided according to the condition.

It is necessary for the person, their guardians, and the school to think about a way of learning that suits the individual while engaging in dialogue.

Supporters should not seek only "visible evidence"

Supporters need to check the person's condition to connect them to systems and services.

However, if the check takes the form of "please prove that you are struggling," it can corner the person.

They were able to talk calmly in one interview.

They were able to answer questions.

Their appearance was neat.

One cannot judge that there are no problems in daily life as a whole based on that appearance alone.

They may have been preparing for days for the interview and resting for a long time after it ended.

Supporters need a perspective that looks not only at what was done on the spot, but also at the preparation and rest required before and after activities, and the difficulty of continuity.

It is important to grasp the whole life by combining the person's story, life records, information from family and related parties, and the views of medical institutions.

Do not draw a line between visible and invisible disabilities

I am a person with a visual impairment and live with a guide dog.

If you have a guide dog or a white cane, it becomes easier for those around you to notice that you have a visual impairment.

Even so, you cannot tell just by appearance how much they can see, or what they can do and what is difficult.

Even when a disability is visible, it does not mean that all necessary support is automatically communicated.

In mental disabilities, because the disability itself is hard to notice from the outside, it becomes even easier to rely on the person's own explanation.

That said, there is no need to compare which is harder, visible or invisible disabilities.

What is needed in common is to check with the person, not to judge based only on appearance or assumptions.

"What can I help you with?"

"Which method makes it easier for you to participate?"

That one phrase reduces unnecessary assumptions.

Toward a society that can support even if it is invisible

I think it is difficult for those around you to understand all the symptoms.
The person themselves may not be able to explain their condition for the day well.

What is needed is not the idea of supporting only after fully understanding.

Even if there are parts you don't understand, do not deny the person's difficulties.

Confirm only the necessary information and protect privacy.

If the method decided once does not fit, discuss and review it.

When the person cannot explain, borrow other ways of communicating or the power of supporters.

Such flexibility is important.

A society that can accommodate invisible disabilities is a society where the person does not have to constantly prove their pain.

It is a society where you can listen to what they are struggling with and think about realistic methods together, even without knowing the diagnosis.

Summary

The difficulty of invisible disabilities is not just that they are hard for others to notice.

It is having the appearance of looking healthy be taken as the entirety of the true condition.

It is having to explain the pain over and over again to receive support.

It is the possibility of receiving prejudice if you disclose the illness, and the difficulty of receiving accommodations if you hide it.

It is having fluctuations in symptoms be taken as contradictions or lies.

These burdens are piled onto the lives of the individuals.

In mental disabilities, difficulties differ depending on the illness and the person.

Even for the same person, the condition changes depending on the day, time, and environment.

Just because you could do it for a short time does not mean you can continue it every day.

Just because you could talk with a smile does not mean there is no anxiety or fatigue.

What is needed for those around you is not to make assumptions about invisible symptoms based only on imagination.

Check with the person.

Respect the range they can talk about.

Look at concrete difficulties and necessary adjustments, not just the diagnosis.

Review the support decided once according to the condition.

Families do not have to know everything about the person.

Workplaces and schools do not have to be unable to provide accommodations until they fully understand the symptoms.

It is important for supporters not to judge the whole life based only on the appearance seen on the spot.

Even if symptoms are not visible, you can believe the person's words and continue the dialogue.

Even if difficulties cannot be confirmed from the outside, you can think about an environment that is easier to participate in together.

Toward a society where the person can connect to necessary support without having to keep proving their pain.

Do not decide the necessity of support based on whether it is visible or invisible, but look at each person's life and hopes.
The accumulation of that leads to a symbiotic society where people with and without mental disabilities can live with peace of mind.

Next time, I will explain the "Why do I feel school is scary?" part of the school non-attendance series from the perspective of the individual.