feeling fake

Diagnosis only goes so far

The way medical diagnosis works can often make disabled people feel fake. (Any kind of disabled people, including people with mental illness or chronic illness). There’s a widespread culture misperception that real disabled people have a clear professional diagnosis, and that everyone else is just faking it for attention or something. It doesn’t actually work that way. Diagnosis is more complicated than that.

People with disabilities are disabled whether or not anyone has diagnosed their disability. Diagnosis is an attempt to recognize the underlying reality (and often an attempt to get someone access to medical treatment or services.) But it doesn’t change the reality. Someone diagnosed today was already disabled yesterday. Many people are disabled for years or decades before they get access to accurate diagnosis. Being undiagnosed doesn’t necessarily mean you’re not disabled. It just means you haven’t been diagnosed with anything.
In addition, some conditions aren’t currently diagnosable, because they have not yet been identified and named by doctors. If a condition was discovered for the first time today, someone had probably already had it yesterday. And last year. And back and back and back. Being undiagnosed and currently-undiagnosable doesn’t mean that you’re fake. It just means that you don’t have an answer.

Even when there is a diagnosis, there is not always an explanation. Some diagnostic categories are vague and unsatisfying. Some diagnoses amount to a list of symptoms you already knew you had. These kinds of diagnoses allow your doctor to bill your insurance and may get you access to treatment, but they don’t always give you answers. Being diagnosed with something vague doesn’t mean you’re fake either. It just means that you don’t have an answer.
In addition, diagnostic categories are often approximations that don’t quite describe reality for everyone. It’s fairly common to meet diagnostic criteria imperfectly. Or to have an atypical form of a condition. This doesn’t mean you’re fake either. It just means that reality is more complicated than textbooks. (Being similar to the textbook also doesn’t mean that you are fake; it just means that sometimes the textbooks are right about some people.)

Even when diagnosis gives you a lot of answers, it often won’t give you all the answers you would like to have. Mostly disabilities are fairly poorly understood. For most people, disability involves significant amounts of uncertainty, and many unanswered questions. 

I don’t want to overstate this. Sometimes diagnosis does get you real answers. Even when it doesn’t, it can be very important. Often, even without answers, diagnosis can make your life a lot better by getting you access to treatment, support, or accommodations. Diagnosis can also mean that someone gets treatment or support that keeps them alive. Diagnosis is often very important for any number of reasons. It’s just not the ultimate decider of who is and isn’t really disabled. Disabled people who aren’t diagnosed with something that fully explains their symptoms are real disabled people, and their needs matter just as much as anyone else’s do.

tl;dr Disabled people are disabled whether or not they are diagnosed. Diagnosis recognizes reality; it doesn’t create it. There are a lot of reasons why some disabled people aren’t diagnosed, or aren’t fully diagnosed. Scroll up for more explanation of why that is.

“Choosing to be disabled”

Ableists often believe that “choosing to be disabled” is a major social problem. They aggressively believe that most disabilities aren’t real, and that people could stop being disabled if they’d just make better choices. They think most disabled people are fakers who just stay disabled out of laziness.

They may see accessibility and accommodations as “enabling”, and try to get them taken away. Or, they may try to force people into treatment (whether or not safe and effective treatment actually exists.) Or they may just be mean and hostile towards disabled people they encounter. Or any number of other things. This hurts all disabled people badly.

People with disabilities often feel like they have to prove that they are not faking, and that their disability isn’t a choice. This can lead us to worry a lot about whether we’re somehow doing this on purpose. In this state of mind, it’s really easy to find things that feel like evidence that we’re fake.

Disability usually involves tradeoffs. We can’t choose to have all of the same abilities as nondisabled people, but we often can make some choices about which abilities to prioritize. This can superficially look like “choosing to be disabled” if you don’t understand how disability works.
For instance:

Medications:

  • All medications have side effects
  • Managing the condition and the side effects can involve complicated tradeoffs
  • There is usually more than one option
  • It can often be a choice of what abilities you prioritize most, and which impairments are most tolerable
  • You may be able to choose to make any particular impairment go away
  • That doesn’t mean you could choose to be unimpaired
  • Ableists will think you are faking no matter which choices you make. They are wrong.

Mobility equipment:

  • People with mobility impairments often have more than one option, and there can be complex tradeoffs. 
  • Eg, which is more important to someone?
  • Being able to go further without fatigue (in a power chair) or being able to ride in a regular car (with a collapsable wheelchair)?
  • Being able to travel a mile on the sidewalk (in a wheelchair), or being able to use all of the subway stops (by walking)?
  • Being able to get into inaccessible buildings (by walking), or being able to go out without being in pain (in a wheelchair)?
  • Retaining the ability to walk (by spending a lot of time doing physical therapy) or being able to take a full course load in college (by spending that time on studying and losing the ability to walk)?
  • No matter which choice you make, ableists who don’t understand disability will see it as “choosing to be disabled”. They are wrong.

There are any number of other examples, for every type of disability. This affects every kind of disability, including physical, sensory, cognitive, psychiatric, chronic illness, and the categories I forgot to mention.

Tl;dr We all have to make choices about how to manage our disabilities, and there are often complicated tradeoffs. No matter which choices we make, ableists will think we’re making the wrong ones. No matter which choices we make, ableists will think that we are faking.

In the face of this kind of hostility, it is easy to start doubting ourselves and believing that we’re fake and terrible. It helps to remember that the ableists don’t know what they are talking about (even if they are disabled themselves). Making choices about how to manage disability is just part of life. The ableists are not experts in how you should be living you life; they are wrong and they are mean.