Editor’s note: contains some spoilers for “Dirk Gently’s Holistic Detective Agency”
Diversity in television is slowly getting better, but we always need to demand more. And I don’t just mean diversity in color, or gender, or sexual identity; I mean diversity in every aspect of the stories being told. Right now there are more shows that allow me to say “Hey that person looks like me!” (just barely) or “Hey I have such a similar personality!”, but one thing I can’t say is “Hey that story is totally about people in my position!” No, I don’t mean being a struggling millennial. I mean being a chronically sick person with an invisible illness.You almost never see invisible illnesses represented on TV Click To Tweet
Some shows are starting to take a small look at some versions of invisible illness. Take a look at “You’re the Worst” or “Crazy-Ex Girlfriend” for some excellent examples of mental illness (which can come with chronic-illness, but isn’t quite the same). Cancer is a more common illness portrayed on TV, but it’s not quite a dynamic I can relate to as I’m not dying. Visible disabilities are more common than invisible (though the industry still needs to work on casting actors with actual disabilities, good job “Speechless”!). PTSD is very rarely directly addressed but so well portrayed in characters like Carol in “The Walking Dead” and Jessica in “Jessica Jones”.
But throughout all the hundreds of shows I’ve consumed and loved over the years, it is only recently that I kind of sort of found a character where I can say “Yeah, same.” when it comes to an invisible chronic illness.Finally I can relate to a TV character with an invisible, chronic illness. Click To Tweet
Douglas Adams, author of “Hitchhikers Guide to the Galaxy,” is my favorite author. He specialized in humorous/ridiculous science-fiction. He also wrote a series of books about a “Holistic Detective” named Dirk Gently. Dirk believes that everything in the universe is interconnected and uses this theory to solve his cases.
Over the past few months the third attempt at a TV adaptation has been airing on BBC America so of course I had to watch it. It’s incredibly insane and confusing and almost impossible to describe to someone who hasn’t seen it. So from such a fantastical show I wasn’t expecting was to find a main character, Amanda (Hannah Marks), with a very realistic invisible illness. Sure it’s completely made-up, but so many of the elements of living with a chronic illness that consumes her life are things that I can relate to.I can relate to so many elements of her fictional illness. Click To Tweet
Amanda has “Pararibulitis”, a fictional nerve disease that causes her to have hallucinations, such as believing her hand is literally on fire or that she is underwater and drowning. Again, thank goodness it’s not a real illness. But like other invisible illnesses it has put quite the damper on her life. She has good days and bad days. She rarely leaves the house, either because she feels like she can’t because her symptoms may flare at any moment or because it’s just one of her bad days. If she does venture out and a flare comes, no one helps her, they just look at her like she is crazy while she is suffering. She relies on a family member, her brother, for financial stability because guess what? If you can barely leave the house you sure as hell can’t hold down a job.
She also relies on her brother to take care of her emotionally and to drop everything at a moment’s notice to help her during a flare up. He also doesn’t want her to drown in the illness so he visits her to do normal things like jam out in the garage and simply hold a conversation. She is isolated so she that craves that distraction. When she is able to meet people and do things, it is everything to her, you can just see it on her face.
She gets her hopes up, because her brother was treated for the same illness and is a fully functional person. And then, when it seems that she may not actually get better, she grieves. This is true of many people with various kinds of real chronic illnesses that may ebb and flow or get better or worse with different treatments. It can be hard to balance hope with disappointment.Amanda's illness may be fictional, but her life is incredibly realistic. Click To Tweet
Apart from the direct symptoms, every single one of those things has been true for me. Some days are good days; I may feel normal for a good five hours, others, are bad, whether it’s pain or a complete lack of energy. I don’t get out much because I either feel terrible or am well aware of my ability to lack the stamina to have enough of a positive experience. If I do go out and start feeling awful, to most I probably look a little drunk or that weird person sitting/laying down on the gross floor. I live with my parents still and am purposefully unemployed, because good days are at best five hours.
As far as my family is concerned, someone always goes with me to doctor’s appointments or the ER, if necessary, and they take me to the hospital once a week for I.V. fluids. If I am just really feeling terrible with nothing to be done, they are there for me. They try to help me feel normal just by being there, because they know how isolating this illness is for me. When I do go out and do things, I enjoy it as best I can; even short visits with friends are highly anticipated. I’ve had treatments that have rid me of my symptoms, which provides hope, even though many symptoms have come back. And when a doctor tells me to come back in six months, and the appointment approaches with not enough improvement, I grieve.No one wants to feel like they're alone. Click To Tweet
Amanda and I may not have the same illnesses, but when I see her struggles I think “Hey, that’s me.” And I’m sure if more people with chronic illness watched, they might finally think the same thing. I only hope that as we are given more in this “Golden Age” of television we continue to get more diverse stories from diverse people, because everyone out there wants to feel like they aren’t alone.