The Unseen Mental Health Challenges Faced by Caregivers of Individuals with disabilities

What if I told you that 60% of caregivers of disabled individuals have considered suicide? 

Especially this writer. 

Although the theme for this World Mental Health Day is "Work-life balance, I will focus on the aspect of the mental health of persons with disabilities and their caregivers.

First of all, I’m glad that the world is recognizing that mental health is essential. However,  some people still struggle with the fact that their words and actions have an effect.

A few months ago, I wrote a story of a special needs mother killing herself, after killing her child with Autism. 

Extreme? 

This may seem fictitious, but it is real.

What if I told you that this happens all the time? 

I feel like everyone runs away from the topic of mental health because they believe that everything should be fine. 

What if it’s not fine? What if you need help?

A month ago, I had the worst meltdown in my life; The thing about unhealthy thoughts is that they spiral out of control and lead to different things. You can think about work and the worry stealthily moves to the future. 

For weeks, I had been burdened with challenges based on catering to my brother with Autism. There were a lot of feelings, however I wasn't dealing with them openly and healthily. 

See also: Knowing my brother was Autistic.

When the cup overflowed, I called my best friend and said,” You know what? Just stay on the call, I want to rant"

This ranting turned into a full-blown meltdown, and then I spewed a lot of nonsense I never thought I would say. 

This horrible, yet eye-opening experience made me think about other people in my shoes and how they may be coping.

Caring for individuals with disabilities is a rewarding experience but has a BIG impact on mental health. 

There are things I read and heard about when I started my neurotypical sibling support group, Your Safe Space NG. 

The experiences of caregivers (special needs parents and neurotypical siblings) vary, overall it’s an experience filled with highs and lows.

Read more: Read about Your Safe Space Ng 2024 

Let us talk about emotional exhaustion. Do you know that caring for someone with a disability over time can leave you emotionally drained? 

One of the things I have faced is emotional burnout and numbness. Imagine having to care for someone with a disability while attending to your mental health.

I always think about persons who are caregivers to people with a physical disability, for example, Cerebral Palsy. I wonder "How do you do all the lifting, assisting with mobility, and medications?" The family may have to get professional training on the situation.

Now, imagine if this person also has health challenges of their own. 

Another thing I’ve battled with is the added worry about long-term outcomes, otherwise known as the fear of the future. 

The question “What ifs” plagues my mind, not to mention the guilt and feeling that I’m not doing enough or that I'm failing in my role. 

What if the cost of caregiving is too much?

What if I cut back on work hours to “be there? 

What about my own family to support?

What if there is no balance between my caregiving role and personal life? 

There are a lot.

See also: The future of caregiving.

I can stay here and continue to talk about the constant responsibilities of caregiving and how it could lead to stress, anxiety, and depression- all mentally tasking.

But I want to emphasize building community. Many caregivers feel isolated and overwhelmed, particularly if they lack an effective support system. 

While I feel that a moment to yourself is advised, when extended, it can become very draining and hard to come out of!

Please, don't isolate yourself. 

Another aspect many people are unaware of is the mental challenges that persons with disabilities face. 

People with disabilities also have mental problems!

If I could live in his head for a day and know what truly bothers him, I would abandon the entire world to do so.

One of my fears is noticing that my brother has mental health struggles and I am unable to help. 

While these challenges can vary widely, individuals with disabilities often face problems that can impact their mental health.

What if we tell you that things like societal stigma also cause anxiety and low self-esteem? Meaning, as neurotypicals, we can make people with disabilities want to lose their minds!

For example, individuals with physical disabilities may encounter barriers to participating fully in daily activities, which can lead to frustration or withdrawal. Sometimes, the mean, insensitive words can lead to confinement.

See also: Normalizing conversations about disabilities.

Mental health is not caused by the disability itself but based on the aspect of lack of support! This made me want to improve how I interact with my brother and advocate for changes in society.  

Every building should be accessible and tailored to individual needs. We live in a neurodivergent world, where everyone is different.

Every eatery, bank, school, and restaurant should have ramps and braille infrastructures, and sign language should be taught in schools. 

These accommodations will help people with disabilities and the public to be aware of and accept differences. 

And if you check most of the time, it's the special needs parents, or persons with disabilities mostly trying to push for change in society; this is because we know firsthand how it will help our children or siblings.

I have listed a lot of battles, but I have to say this is the most rewarding role ever. The things my little brother has consciously and unconsciously taught me will stay with me forever.

And I'll forever be grateful to him and those lessons.

See also: This Autism documentary will change your lives.

However, I am taking a different approach to handling all of my unsettling nerves and anxieties. 

I’m not the best at handling stress; Like others here, I suck it up till it overflows. Now, I’m deciding to send all my worries to God; this decision gave birth to a prayer group called “Seeking Strength from the Infinite One.” 

God truly understands everything that we go through. While others may struggle to understand my role or what to say during tough times, I choose to take solace in God’s presence, recognizing that God can give me strength and help me with all my struggles. 

It's a group open to everyone and aims to intercede on other's behalf.

I believe God is telling me, "We rise by lifting others"

Finally! Caregivers, believe you are heroes.

But take time to recharge by seeking support from groups, taking regular breaks, and asking for help when needed. Think of your health and the health of those who rely on you.

As for the public, acknowledge the people with disabilities and caregivers' struggles and don't make it a BIG deal if they need to seek help, whether through professional help, or community resources. 

Asking for help doesn't mean weakness.  

And special needs families, let’s talk about our stories openly! Although the world can be cruel, it should never stop us from sharing our stories. We are either inspiring people or stopping misconceptions.

Caregiving is a role filled with love, dedication, and selflessness. I hope it gets easier for you. Rooting for you!

Signed, a not-so-perfect-but-grateful-neurotypical-sibling