Learning to Live with an Invisible Disability Such as CPTSD

CPTSD Foundation
6 min readAug 22, 2022

Having an invisible disability like complex post-traumatic stress disorder is challenging. There are few outward signs to show that the person has a disorder, so often, family, friends, and employers don’t understand or recognize CPTSD as a disability.

This article will explore invisible disabilities and how people adapt to their new reality.

What is an Invisible Disability?

I explore the topic of what an invisible disability is in a prior post, but for the sake of clarity, I will write about it again. First, we will tackle the definition of disability.

According to the Americans with Disabilities Act of 1990, people have a disability who have a physical or mental impairment that limits one or more life activities, have a record of impairment, or are regarded as having an impairment.

The definition of invisible disability differs because it is not as visual to others as a wheelchair or crutches would be. Seventy-four percent of Americans living with a severe disability such as complex post-traumatic stress disorder do not need or use devices, so one cannot judge a person’s disability solely by how the person looks.

Five Things That Define an Invisible Disability

The Americans with Disability Act (ADA) goes further in defining a disability as follows:

“A person is considered to have a disability if he or she has difficulty performing certain functions (seeing, hearing, talking, walking, climbing stairs, and lifting and carrying), or has difficulty performing activities of daily living, or has difficulty with certain social roles (doing schoolwork for children, working at a job and around the house for adults)” (McNeil, J., 1997)

There are four things that you may not know about invisible disabilities.

  1. Invisible disabilities are more common than you think. According to the Centers for Disease Control (CDC), 61 million adults in the United States identify as having a disability, with 10% (6.1 million) being invisible disabilities.
  2. Invisible disabilities often affect how a person functions. Just because a person doesn’t show an outward condition such as a mental health disorder does not mean the person is significantly impaired. For instance, a person who lives with ADHD lacks the ability to function in social and personal situations because they may not be able to concentrate and are easily distracted.
  3. Invisible disabilities can get better and then worse again. People struggling with a mental health condition such as major depressive disorder or an anxiety disorder have good and bad days.
  4. An invisible disability can strike any age or demographic group. There is no guarantee that someone in your family or you won’t develop a mental health problem at some time in your life. No one is immune. Invisible disabilities are everywhere, and the people who have developed them should receive the same rights and accommodations as those with visible ones.

Of the many people who live with an invisible disability, many work without problems, but for those of us who can’t, there is sometimes the option of filing for social security benefits.

Learning to Live with an Invisible Disability

The first step in healing is knowing that you have a problem and are aware that you have complex post-traumatic stress disorder. Knowing the enemy is critical to learning to live despite it.

Complex post-traumatic stress disorder or other mental health problems is not a death sentence. You can learn to live with the symptoms and overcome the worst of them in time. You did not form CPTSD overnight; you cannot heal overnight.

The good news is that healing will take longer than you want but not as long as you fear (Paula McNitt, Ph.D.).

There are three primary stages to recovery from CPTSD.

Create safety and stability. People living with CPTSD need and crave safety, so the first step in recovery is ensuring that the person is safe while dealing with the memories and emotions they remember and feel. If the person has a therapist to work on the causes and symptoms of CPTSD, they must first ensure that their client develops a deep sense of calm stability. These precautions are necessary because due to the instability the person with CPTSD had in childhood, their nervous system is overactive, leaving them riddled with fight/flight/freeze responses. Over time, people living with complex post-traumatic stress disorder will learn how to help themselves feel and recognize that they are safe now.

Learn to remember and to mourn. This step is vital for recovery as skipping it leaves the person living with CPTSD with many unspoken and unfelt emotional turmoil. The only way to accomplish healing is to go through the chaos; you cannot go under, over, or around mourning; you must go through.

Reconnection and integration. One can establish safety and stabilization by remembering and mourning. However, once the worst of the trauma has been processed, it is time to begin looking ahead to the future. It is now the time to discover and define who you are as a person. Instead of being a forever victim, feeling powerless and without hope, you can reconnect with yourself and feel a sense of purpose. Often, survivors choose to become advocates reaching out to help others who are just beginning or are in the middle of their healing journey. The end game of this step is to practice forward-thinking and not dwell in the past anymore.

It is critical to remember that these steps are not usually linear; instead, one may go in and out of them until finally, you are at peace most of the time.

Acceptance

Perhaps the most challenging aspect of dealing with an invisible illness like CPTSD is that people tend to judge harshly because you don’t have an outward sign of what is troubling your mind. Often they believe and sometimes cruelly state that survivors should forget about the past and move on.

However, it isn’t only other people who misbehave toward the survivor; people who have complex post-traumatic stress disorder often feel badly toward themselves.

A critical aspect of healing CPTSD is to learn how to accept and love oneself. Don’t judge where you are today in your life as a failure; instead, remember how far you have come and that you are incredibly resilient.

Focus on what you have approved and what has improved, and think about what you are doing well. Examine your motives and the results you have already achieved. Prioritize what you want to change next and keep your eyes on the prize.

By examining your motives and their results, you can reflect on how things have been going and allow self-feedback to happen naturally. You must own your outcomes so you can do things better.

Build your self-confidence by allowing yourself a self-pep-talk now and then. These little talks with yourself will aid in self-acceptance and lessen the pressure of having an invisible disability.

Ending Our Time Together

Learning to live despite an invisible disability is vital to having a calm and peaceful existence. Although it would be better if the trauma that caused your CPTSD never happened, it did, and you cannot change that fact.

Working while healing is possible, but for many, employment is impossible while working on the issues surrounding complex post-traumatic stress disorder. If you can work, remember you have rights, and an employer should provide reasonable accommodations for you.

I hope you have enjoyed August’s four pieces about working while healing from complex post-traumatic stress disorder.

“What happens when people open their hearts?”
They get better.” — Haruki Murakami

“The emotion that can break your heart is sometimes the very one that heals it…”
— Nicholas Sparks

“Our wounds are often the openings into the best and most beautiful part of us.”
— David Richo

References

Accessliving.org. Five things you didn’t know about invisible disabilities.

https://www.accessliving.org/newsroom/blog/five-things-you-didnt-know-about-invisible-disabilities/#:~:text=Invisible%20disabilities%20are%20common,of%20those%20are%20invisible%20disabilities.

CDC, A. (2019). Disability Impacts All of Us. Retrieved from:

https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html#:~:text=61%2520million%2520adults%2520in%2520the,is%2520highest%2520in%2520the%2520South.

Kurz, A. E., Saint-Louis, N., Burke, J. P., & Stineman, M. G. (2008). Exploring the personal reality of disability and recovery: A tool for empowering the rehabilitation process. Qualitative Health Research, 18(1), 90–105. Retrieved from:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2879973/

McNeil, J (1997.) Disabilities affect one-fifth of all Americans. Census Brief, 97(5).

Originally published at https://cptsdfoundation.org.

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CPTSD Foundation

Successfully equipping complex trauma survivors and practitioners with compassionate support, skills, and trauma-informed education since 2014.