Different, not less: making invisible illness, visible

March 30, 2023

Collage created by Jamie with photograph by Cottonbro Studio on Pexels

Jamie Aldridge explains how to advocate for, support and embrace a loved one’s disability

Invisible illnesses affect millions of people worldwide, yet they often go unnoticed and misunderstood by others. From mental health conditions to chronic pain and autoimmune diseases, these conditions can significantly impact a person’s daily life.

Their symptoms are not always visible and this can lead to prejudice and stigma, promoting ignorance and ableism. To break down these barriers, we need to understand what issues disabled people face. How do invisible illnesses affect people living with them, and what can we do to support them?

In the UK’s Equality Act 2010, you’re considered to be disabled if you have a condition which has a ‘substantial and long-term negative effect on your ability to do normal daily activities’.

Disability probably isn’t as unique as you may think it is. Disability charity Scope reports that 9% of children are disabled, while 21% of working age adults are disabled, including myself. I have a number of invisible illnesses. You can read more about my experiences here.

The Family Resources Survey reports that working-age adults are most likely to have conditions affecting their mobility or mental health (42% each). Children are most likely to have mental health (21%) or social/behavioural (37%) conditions.

You need to go beyond performative activism and make a conscious effort to be inclusive

As a disabled person, I know that disabilities come in all shapes and sizes, and can affect us in different ways:

  • People with sight or hearing loss might need aids or adaptations to navigate the world, like hearing aids or a guide dog.
  • Autistic people can find it hard to interact with others because social cues don’t come naturally to us. We can also have sensory issues, meaning we become overwhelmed easily.
  • People with learning disabilities can find it harder to understand information and may need time to respond to questions or engage in conversations. They may need help from family or support workers to do things like pay bills.
  • People with physical health problems may need to use an aid to get around, like a wheelchair. We might have symptoms like pain or fatigue that make it hard to complete daily living activities.
  • People with mental health needs can find it hard to engage with others and the world around them, and can be socially isolated. Examples of mental health conditions include anxiety, depression and schizophrenia.

It’s a good place to start from, having an awareness that disability exists. However, you need to go beyond performative activism and make a conscious effort to be inclusive of a disabled loved one.

[authquote text=”Living with invisible illness makes our world smaller but we still have skills and value”]

With such a wide range of difficulties disabled people can have, it can be difficult to know where to start when trying to support and validate them. If that’s the case for you, these tips might be helpful:

1. Do listen to, and take the lead from, the disabled person themselves
We all have different techniques to manage our symptoms and what helps one person may not help another. That’s why it’s important not to assume you know what someone’s going through. Ask someone what kind of support they need from you, if any.

2. Do educate yourself about our conditions
It can be helpful for us to explain how a condition affects us personally, but we aren’t limitless resources of knowledge. There are lots of books, websites, videos and content creators online which discuss invisible illnesses, which can explain these conditions to you.

3. Don’t forget that we are more than our illness and that we have other interests and passions
We’re the same person we always were. Living with invisible illness makes our world smaller but we still have skills and value. Having a conversation about our hobbies and interests may lead us to find ways we can support you as well.

4. Do be patient and understanding, as chronic illness can be unpredictable
It can be frustrating if you make plans and your disabled friend pulls out at the last minute, but I promise it’s even more upsetting for us, having to cancel plans because we aren’t well enough to go out.

5. Do respect our boundaries, including not offering unsolicited medical advice
Chances are, the person has already been asked a hundred times if they’ve tried yoga, meditation, physio, or mindfulness, or any of the other treatments you might be about to suggest.

6. Do listen to and acknowledge our feelings and struggles
There’s an ongoing process of grieving that happens when you develop a disability. We grieve for the loss of our health and the loss of freedom and independence that comes with it. All those things can take a toll on our mental health. A lot of the time, having health issues sucks, and it’s OK to feel sad about that.

Celebrating our differences promotes an environment of respect and support rather than stigma and intolerance

There are resources and support available for people with disabilities, but it can often be difficult to access the help they need. This is especially true for people with invisible illnesses as stigma can make it harder to speak up.

Scope offers information and advice to anyone with a disability, while Mencap supports people with learning disabilities and Mind supports anyone living with mental health problems.

Scope, Mencap and Sense can support disabled people to find and keep employment. These services are important as disabled people are underrepresented in the workplace. Scope reports that disabled people are almost twice as likely to be unemployed as non-disabled people.

There are also organisations that support people with specific groups of conditions, such as Versus Arthritis and Dysautonomia International.

Celebrating difference is important for everyone, but especially for those of us with disabilities or invisible illnesses. It’s about recognising our diversity, and promoting an environment of respect and support rather than stigma and intolerance.