Sunday, March 13, 2016

Invisibility Cloaks: On Writing Characters with Invisible Illnesses and Disabilities

These masks are part of an exhibit called &quo...
. (Photo credit: Wikipedia)
Today, my dear friend Joanna has joined us to talk about her experience with an invisible illness. It is not unusual for people to have illnesses that have a major impact on their lives that no one can see. Often, this kind of illness is discounted. For some, this is a mental health issue (brain chemistry issue); for others it is an autoimmune issue or other chronic and debilitating challenge.

One of my most popular articles here on ThrillWriting was about writing characters with physical disabilities. People like to read about characters with whom they can identify. Also, as always, I want to advocate the position that when we write, we educate. When we write, we normalize. 

We have so much power as writers. Including people from demographics which aren't normally included in stories is empowering, edifying, and interesting. It's a challenge to be sure.

Above, there is a tab called DIVERSITY IN YOUR CHARACTERS where you can explore topics such as economic diversity, nation of origin diversity, and ethnic/racial diversity , among other topics. 

Fiona - 
To start, can you define, for those who have never heard the term before, "invisible disability"?

Yes, an invisible disability is a chronic condition that can't been seen readily by others. They may look normal to you for their age, but what you can't see upon first observation is that they have some kind of auto-immune illness or pain condition that can severely limit their abilities to function consistently as a "normal" person.

Fiona - 
Can you please tell us a little bit about your journey and your blog?

Joanna - 
Sure - I'm Joanna, and I live with chronic pain called fibromyalgia. In my, case, my nervous system doesn't work normally. It interprets input about temperature, activity, muscle soreness from exercise, normal joint pain from arthritis, exposure to allergens, sensation of fabrics, pressure, wind and emotional stress in an atypical way. 

For example, when I get too cold, I pass out and when I wake up I hurt all over. Or I have to be very careful when I go to the gym to work out because too many repetitions of weight lifting or too many minutes on the elliptical trainer has a delayed reaction with fully body pain 48 hours later that prevent me from standing for more than a minute at a time. I've been aware that my chronic pain experiences are not normal and have worked with many professionals and done my own studies over the last decade to find ways to manage ­­­­­­and live a normally functioning life despite my atypical nervous system.

My personal Reiki practice has been one of the main ways I've managed on my own - the principles helped me learn to let go of suffering and the relaxation practice helps me cope better with the pain. I found such relief and help from my practice that I spent years teaching others what I learned through a professional Reiki practice. I used to blog on a regular basis, but I am currently on a sabbatical to pursue other studies.

Fiona - 
A personal story - I remember being at the store one day and a woman wanted to know why we were using a service dog. I explained the dog's job was to prevent my daughter from having diabetic seizures. She turned and stared at my daughter and pronounced, "She shouldn't use the dog. she looks perfectly normal." Huh. 

Joanna look perfectly normal - beautiful, in fact. Why does this make your disability so much harder to deal with than someone where it is more obvious to the normal person's perceptions?

Joanna - 
­­­­­­­­­­­­­­­­­Well it's those asumptions that people make. They assume that because you look a certain way, you should behave the way they expect you to. It means they decide in advance that you are perhaps a hypochondriac, or you are exaggerating for attention, or they don't want to take you seriously.

And they take it personally when you don't behave like they expect, and get upset and angry at you.

Fiona - 
Scientific findings on  fibromyalgia is coming to light - but back when you were diagnosed much less was known - from your experience, did the doctors etc. support you or did they also diminish your experience?

Joanna - 
Great question. I believe the average length of time from when someone starts experiencing symptoms until they receive a proper diagnosis is something astonishing like 6 years, still. 

While I had an extremely supportive nurse practitioner who believed in my experience and sent me to many, many specialist - it took a very long time before the right diagnosis, medications and management plans were determined. One place we tried was a pain clinic, and I had a terrible experience. I went with my mother, who had been to this clinic previously with both my father and her mother with positive experiences. She was stunned to see how the doctors treated me - in my 30's but looking more like in my 20's - as a drug seeker and complainer - and did not take my complaints or description of my fitness routine seriously. My mom stood up for me, since she lived with me at the time and attested to the truth, but ultimately I decided to go to another pain clinic that could treat me more respectfully despite my age.

Fiona - 
I have never read a book where a chronic, invisible medical issue (outside of psychological issues) has been in the plot line, though it's rampant in our communities. I wonder why - what do you think? And what are the implications of not having those with invisible illnesses a part of literature, TV, and the movies?

Joanna - 
Well my guess is that only someone who experiences it first hand, whether in themselves or a loved one, would have a real perspective on what it's like - and those living with it are probably too busy to write a book or make a show! 

I suspect that mental illnesses are more well known at this point, and our media culture tends to glamorize (even in a negative way) psychological illnesses that lead to violence, murder, mayhem etc... It makes for an interesting story. 

Reading about the courage and willpower someone with an invisible illness has to summon up from her soul for years to get a diagnosis and then to just live with a condition that isn't going away and might get worse - that seems more like a tear jerker sort of story. Harder to write and to read. 

Our daily lives can be painfully tedious in how much we have to pace ourselves and be disciplined and make choices about how much we can do in any given day without costing us too much out of tomorrow. I imagine it doesn't make for an exciting story at all. However, by not portraying this struggle through media (very few celebrities come out with invisible illnesses as well), people stay ignorant and uninformed and prejudiced.

Fiona - 

You developed a Facebook group where writers might be able to connect with folks with invisible challenges so they can inform themselves and write their WIPs right. Would you share the name?

Joanna - 
It's called My Illness is Invisible but I'm Not

Fiona - 
What would you like a writer to know as they plotted a book that included a character with an invisible illness. Are there some global experiences that you've learned about from your group?

Joanna - 
One of the biggest challenges is other's perceptions that we'll feel or get better soon, and it's incredibly frustrating. These illnesses are generally life long, and it's not like having the flu. It's also often not life threatening, so dealing with the inconsiderate comments and advice from outsiders is a running frustration for us. Also having to explain over and over again to people who meet us about how we have to make choices an average healthy person doesn't have to make, and living the spoon theory, that should be in any book.


Fiona - 

What are some choices that you have to make that the average person doesn't need to -- can you take us on a short trip through your day and how various things might affect you or someone with your diagnosis?

Joanna - 
I am lucky, in that for the most part, I live a more normal life than many who struggle with my diagnosis. I have a full time job instead of being home on disability. That job is super important to me and my happiness, so I make choices on a daily basis to make sure I have enough "spoons" (see above listed article to understand this concept) to perform well at my job. I wake up early, so I have time to sit up in bed and get through the initial aches and pains that come every morning. I can't move quickly, or it gets worse instead of dissipates. Some days, I just don't have the energy or ease of movement to go through my morning routine, so I skip a shower and making coffee and lunch, and just get myself dressed and out the door. 

Now that it's cold out, I have to figure out how cold it is and which extra layers I need to wear. I drive to the train station and wait in the car until the train is approaching. I sit in a certain seat every day that I know has heat so I stay warm enough during the commute. I spend my time on the train meditating and clearing my mind of the last night's bad dreams and pain so I can be focused at work. I arrive early so I have extra time to pick up the food I couldn't prep ahead of time, and so I can move as slowly as I need to my office. I take off all my layers and try to decide if today is a day I can go to the gym. I work until lunch and then I assess where my body is at - would moving at the gym help me function better this afternoon - or would it make it harder? I either go for a walk if it's warm, find a spot to meditate if I'm struggling or go to the gym on my lunch break, or on occasion have a meal with a friend for some social fulfillment. My choice depends on what will make the afternoon go more smoothly and productive. If I didn't get to the gym at lunch, I check in at 4pm to see if I can handle a workout after work. I can go more slowly after work, so I more often end up going in the evening when there is no time constraint forcing me to move more quickly than is okay for me. 

After my workout, I sit in the locker room for a while resting. Then I get dressed, bundle up, and start my trek home. If I'm not too uncomfortable, I may have plans after work - but usually those are only with people who can handle a last minute cancellation if the pain is too high. Or I may make dinner and prep food for the next day. If pain is high, but not too high, I may climb into a hot bath for an hour of relief. If not, I go straight to bed. I'm in bed laying down to let my body rest by 9pm because the routine starts again the next day at 5:30am. I don't sleep well, so I spend more time in bed "resting" to make sure I have as many spoons as possible for tomorrow.

Fiona - 
Thank you. Is there anything I didn't ask about that you think would be important for a writer to know about writing characters with invisible illnesses/disabilities? 

And here I will mention that despite all of the issues Joanna faces, she is still a highly successful business woman with an MBA, and has a rich social life including close family, friends, and dating. . . so a writer wouldn't have to write a plot that takes place on a couch.

Joanna - 
That's true! I do have an MBA and had my own business for many years. I do socialize on the weekends, but rarely during the week due to my limitations. I spend a lot of my free time taking classes like yoga, meditation etc... they help me manage the pain or in appointments like getting a massage etc.. so that I can feel my best.

Its just that my best is not what a normal almost 40 year old feels like at her best. To be honest, a large part of my social life is long distance - I stay connected with my closest friends online and on the phone. I don't see a whole lot of people during the week unless they live in my house or work with me.

I do try to go off on an adventure at least once a month, whether a road trip or plane trip, but I have to plan ahead for pre-emptive R&R ahead of time and post R&R after to recuperate. I don't stay up or out late because getting a solid 6 hours of sleep is super important to me functioning, and it takes 9+ hour in bed to get 6 good hours.

I have a very rich emotional life and a large circle of friends. I see those who live close by and who are in my inner circle on the weekend, and the rest once in a while or via Skype or phone call. 

Since my body has limitations, that's probably why most of my "fun" is introspective work - taking spiritual classes, reading, learning how people tick, helping others. I also volunteer for a couple of non-profits, mostly work I can do on a computer from home. I am happy and my life is mostly filled with enjoyment, as I learned a while back that while pain is my constant companion, suffering is optional.

Although I might add, also, that this level of challenge for me in getting through a workday is one of the reasons I have let go of the idea of becoming a mom. I can barely get myself to work and to the gym and fed, how can I do that for someone else?

Fiona - 

A huge thank you to Joanna for sharing her personal story in order to help us write it right.

As always, a big thank you ThrillWriters and readers for stopping by. Thank you, too, for your support. When you buy my books, you make it possible for me to continue to bring you helpful articles and keep ThrillWriting free and accessible to all.


  1. Excellent article, both as a writer and as a sufferer.

  2. Great topic. I write a lot about invisible disabilities as well.

  3. It was great to read this post from different points of views, thanks Fiona and Joanna.
    Personally, I think it's very difficult to write about invisible disabilities because you need to be subtle but not too subtle.
    Thanks for sharing your experience with readers!
    Kyle from