The overlapping worlds of disability and mental distress

Disability and mental health are complicated companions. Being disabled doesn't automatically mean having poor mental health. But living with barriers, discrimination, uncertainty, isolation and a lack of appropriate support can take a toll. For those with mental health conditions, that toll can be even greater, particularly when combined with poverty, homelessness, rejection or inadequate support.

I am Autistic, deaf, and live with multiple sclerosis (which is mostly in remission). I have also faced serious mental health challenges during different periods of my life, which were themselves disabling. My journey with severe depression led to suicidal ideation, but also to my eventual Autism diagnosis.

Living with impairments changes the way you experience the world, and it also changes the way the world experiences you. There are the obvious things such as the limitations, pain, fatigue, appointments, adaptations, and all the things that take more effort than it seems they should. But there are also the things people don't see.

They don't always see the exhaustion from constantly having to explain yourself, the mental energy involved in navigating systems that were not designed with you in mind, or the frustration of needing help with something you once took for granted. They don't see the grief when your body or mind won’t cooperate in the way you wish it would, or the struggles you may keep behind closed doors for fear of judgement. Sometimes, they don't see the strength it takes simply to keep showing up. Or they may not understand when you simply shut down.

There are days when I am incredibly proud of what I have achieved. There are other days when I am simply tired - tired of fighting for our rights, tired of making yet another stand, tired of the grind, just tired. I can also be hard on myself, and my own expectations and perceived failings can add to that mental health load.

I have learned that disability and mental health often exist together.

I have learned that achievement and tiredness can exist together.

I can be strong and overwhelmed.

I can advocate for others and still need someone to advocate for me.

I can contribute, lead, and make a difference, yet still have times when disability and mental distress have a huge impact on my daily life, and times I can’t do any of those things.

Perhaps one of the hardest parts of my impairments is that people often see either the disabilities or the person, but not always both. Sometimes they see neither, partly because I mask so often. Mental health disability can be invisible in much the same way as Autism. I can look fine while using enormous amounts of energy simply to get through the day.

There is a real fear of not being believed or being judged by what other people think we should be able to manage. When my children were young, I feared seeking help in case it meant my children might be removed from the home. Even now, I worry people will only see what I cannot do, or at the other extreme, put me on a pedestal for what I have achieved, only for me to disappoint them.

Mental health conditions and disability are not separate worlds. Mental health conditions can themselves be disabling, particularly when they affect a person's ability to participate in everyday life. It can be challenging to ask for help until we reach a crisis point. At the same time, living with any disability can affect mental wellbeing because of stigma, discrimination, isolation, uncertainty, inaccessible environments and the ongoing effort required to navigate systems that were not designed for us.

Our communities can learn from each other. We can listen without creating a hierarchy of whose disability is more legitimate or whose struggles are harder. We should not need to compete for understanding, resources or recognition. We need communities where difference is accepted, where asking for help is not seen as weakness, and seeking support does not leave people exposed to risk or inadequate safeguarding.

A diagnostic label does not tell us everything about a person, nor does it determine what someone can or cannot do. Disability is individual, fluctuating and contextual. My hope is that we can move beyond asking, “What is wrong with you?” and instead ask, “What's happening for you?” “What barriers are you facing?” and “What would help you participate and belong?” Ultimately, disability inclusion and mental health support are not just about services. They are about belonging. They are about being able to say, “This is who I am, this is what I experience, and I still have a valued place here” while offering that same unconditional acceptance to others whose struggles may not be the same as ours.

Our communities can learn from one another, that support should not be conditional on appearing sufficiently disabled, sufficiently unwell or sufficiently resilient. People should not have to reach a crisis point before their needs are taken seriously. Perhaps the greatest lesson is solidarity rather than separation.

Sometimes the most powerful thing we can offer someone is not advice, encouragement or another reminder to be resilient. Sometimes it is simply being acknowledged: “I see you. I believe you. You don't have to pretend you're okay with me. And you don't have to carry everything on your own.”