While it's common to think that being disabled means using a wheelchair, that's not always the case. In fact, "Less than 8% of disabled people use wheelchairs," according to Paul Dodenhoff's article on the Disabled World website. Many people have invisible illnesses, which means there are no visible signs of any impairment.
What kinds of health issues are invisible?
Some of the more obvious invisible illnesses include things like memory loss and dementia, learning difficulties and ME (myalgic encephalomyelitis or chronic fatigue). But the term can also apply to conditions like cancer, sensory impairments (such as some forms of sight loss or hearing loss), mental health issues, HIV, chronic pain (in various forms), physical disabilities (like multiple sclerosis), epilepsy or other kinds of neurological disorders.
The list of invisible illnesses is nearly endless. And each illness is very different and comes with its own set of challenges.
The government criteria for disability under the Equality Act 2010 are the same for visible and invisible conditions. The law defines any disability as "a physical or mental impairment which has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities". The GOV.UK website has a more thorough explanation of disability under the Equality Act 2010.
If you meet these criteria, you have certain rights in employment and education. The law also gives you access to goods and services, and it supports you when buying and renting land or property. GOV.UK's explanation of disability rights can give you additional details. As for benefits, the GOV.UK site explains how you are entitled to Personal Independence Payment, Employment and Support Allowance or other benefits determined by the benefits calculator.
You can still have an invisible illness without meeting the rules of the official definition, but if your illness only has a minor or moderate impact on your daily life, you won't be eligible to receive additional rights or benefits.
Living with an invisible illness
There are a few things that can help you manage your invisible illness. Consider these simple suggestions:
Self–acceptance. If you are newly diagnosed, it may take you a long time to accept the fact that you have an illness—especially if your illness is not obvious to other people. Don't be too hard on yourself if you find this gets in the way of the things that you used to do.
Meeting others with your condition. It might be useful for you to speak with people in a similar situation and discuss strategies that could help you deal with your condition. There are various ways to connect in person, like joining a charity that advocates for your particular illness or discovering a support group that meets in your area. You can ask your local surgery for suggestions. You can also reach out through online groups or social networks.
Getting out and about
Many arts organisations will offer access to help you enjoy cultural activities. If an organisation has a special scheme for disabled people, it probably includes something for you. Simply ask for more details if you like the sound of it!
For instance, if you like seeing films, you can find out more about the CEA Card—a national card scheme which entitles your guest to receive a complimentary ticket to attend the cinema as your companion.
Don't overlook special access to transportation throughout the country. You may be eligible to apply for a disabled person's bus pass from the GOV.UK website, request a disabled persons Freedom Pass through London Councils or get a Disabled Persons Railcard from National Rail.
In an effort to make passengers more aware of the needs of others, Transport for London recently launched its Please offer me a seat campaign. And in England, the government is reviewing Blue Badge eligibility with the goal of making parking more accessible to people with invisible disabilities.
Do I tell other people?
In the end, it is up to you how you approach the subject. You might feel that the matter is private, and that you could be discriminated against if you tell others. However, you might also feel that if people knew about your illness, they would be more compassionate towards you. Their reaction could very well surprise you.
Fortunately, it seems that the stigma around invisible illnesses is gradually beginning to fade, and by talking openly about it, you may help keep that positive momentum going.
Finding out more about invisible health issues
In the last few years, there has been much more in the media about invisible illnesses, and some people have been offering short online accounts of their experiences. The following sites can help you learn what others are thinking and feeling:
- Citizens Advice: Disability discrimination has an easy to understand explanation of what you're entitled to as someone with a disability.
- Deafie Blogger explores what it's like for someone who is profoundly deaf to cheer, rant and campaign for herself and others who don't "look" disabled.
- Jewish Care Interact Forum offers a safe place to give and get peer support around specific health conditions.
- Invisible Disabilities List and Information has a good overview of definitions and resources on the subject.
- invisible i is a vlog that takes a very personal approach regarding what it's like to live with several invisible disabilities—both physical and mental.
- Langdon has some case studies on learning disabilities within the Jewish community.
- Scope: Online community offers support from people who are sharing their real life experiences on a variety of subjects, ranging from employment to dating to benefits and more.