According to the Americans with Disabilities Act of 1990 (ADA), someone who has a disability has a mental or physical impairment that limits one or more main life activities.
However, the term "invisible disability" refers to someone who has impalpable pain, dizziness, fatigue, cognitive dysfunctions, and brain injuries.
Whether you have a family member, a significant other, or a friend living with an invisible disability, there can be times when life gets a little frustrating, confusing, and hard.
This doesn't mean you don't love them; just that you might have trouble understanding what they're going through at times.
RadioMD's Naturally Savvy co-host, Lisa Davis, MPH, knows this firsthand.
Her mother struggled for years with sensory processing disorder (SPD), which caused her to experience a hypersensitivity to a range of symptoms and emotions. Now, Davis's daughter is experiencing some of those same symptoms.
Hoping to help raise awareness like SPD and other brain-based disorders, Lisa decided to help co-write her book, Easy to Love but Hard to Live With: Real People, Invisible Disabilities, True Stories.
The book contains 35 personal and powerful essays that were written by adults suffering from Autism, OCD, ADHD, mental illness, and other brain-based disorders, as well as those who have stuck by their sides through the bad and good parts of their illnesses.
What else do you need to know about invisible disabilities?
Listen in as Davis shares her personal story of living with someone with an invisible disability, and the awareness she hopes to create.
RadioMD Presents: HER Radio | Original Air Date: May 14, 2015
Host: Michelle King Robson & Pam Peeke, MD
Dr. Pam Peeke, founder of the Peeke Performance Center, and renowned fitness and nutrition expert and Michelle King Robson, founder of EmpowHER.com and leading women's advocate. Cut through the confusion and share the naked, bottom line truth about all things woman. It's HerRadio.
PAM: I'm Dr. Pam Peeke, Michelle is off today. Wow! I've got a really awesome book, with a theme that I think that everyone out there in Her radioand really needs to know about. The name of the book is Easy To Love, But Hard To Live With: Real People, Invisible Disabilities, True Stories. And our guest is Lisa Davis, one of our brethren here at RadioMD. Lisa, for the past 25 years has worked as a radio and television personality, health educator and coach in nutrition, weight management and exercise training.
Ah! Good grief, Lisa, number one, welcome to HerRadio, once again and thank you for this fabulous book. Could you tell us why you wrote it?
LISA: Thank you so much, Dr. Peeke. I'm so excited to be here. Well, my mother had something called sensory processing disorder which I didn't even know about until I had my own daughter.
My mother had it, there wasn't really a name for it. She was never diagnosed. They said she was high strung and was anxious, which was true because everything in the environment was too loud, too hard, too fast, too much. She would just hide in her room all day and it made it very difficult to function and it made her depressed.
I just wanted to raise awareness for other people who living with invisible brain-based disorders like sensory processing disorder, autism spectrum, learning disabilities like dyslexia—anything that you look at the person and say, "Well you look fine to me, Diane, what's wrong?" She never really had words for it, so I thought, you know I don't want to have anyone else to have to suffer like that. So, that's why I wanted to put the book together.
PAM: What was it like when your mom found out what she had? Did it take a long time?
LISA: This is what is so heart breaking, she died in her fifties from ovarian cancer and never got validated. Ever.
PAM: Oh, gosh.
LISA: Yes, that was the other impetus. I really don't want anybody else—and my daughter goes to a regular school and she has an individualized education program, and she has therapies. We know what her issues are and we are able to help her. For my mother, she just had to suffer and not get the validation, which makes such a huge difference. There is so much isolation with these issues.
PAM: I'm sure people are out there saying what are the other brain-based disabilities and who are these people, when you say 'easy to love, but hard to live with'. Give us some more examples. Because you interviewed so many people.
LISA: Oh, sure. There are 35 essays in the book. One is by my wonderful co-editor, Tricia Bliven-Chasinoff has OCD A lot of people think OCD is just obsessive hand washing, which it can be, but also it can be intrusive thoughts that just will not leave you alone. And checking things over and over. So, she shares her story. One of my favorite stories in the book is a grandfather who has an autistic grandson and talks about how his grandson helped heal his depression. I did a great Q&A with Henry Winkler for the book about his dyslexia.
PAM: Yes, tell us about that.
LISA: Oh, he is the nicest man. Talk about immense. This guy is fantastic. He lived with dyslexia; he always thought he was stupid because his own parents called him a dumb dog. I forgot the word in German, because they spoke German. Back then, people would assume you weren't trying. I even remember growing up as a kid in the 70's I could name five kids in my class who definitely had undiagnosed ADHD, Asperger's, some of the other learning disabilities, and they were just called lazy. I'm sure, Dr. Peeke, that you could imagine this yourself going back and going, "Oh, yeah, there was something interesting or different about so and so". That's what happened to Henry and then when he had his own children, they all had learning disabilities. So, he didn't get his diagnosis until he was 31. But it still took him years to not feel stupid even with all of his success.
PAM: How did he deal with it finally? Help us understand a little bit of the lesson of how you navigate. Because you've got two different things going on—two parallel universes. One is the person who is actually afflicted with it and that's the person you love, but they are hard to deal with. How do you, then, as the caregiver, deal with them?
LISA: That is a really good point. You know, it's interesting because half of the essays in the book are by people who have the disorders. They're actually adults. Mainly, the stories are about adults and I think it's good because a lot of the books out there are for kids, which is really important, but we wanted to shed some light for adults. And there are the stories about people like me who had a mother and had a daughter with issues. I think one of the biggest things is to learn as much as you can about the person's disorder and also to make sure to make time for yourself—to take care of yourself. When my daughter was a baby, she did not sleep. I mean, literally, it was terrible. She cried all of the time. My husband would say, "You have to find a way to nurture yourself because you're just loosing it." And I was. It was really, really challenging.
LISA: I think what is hard too, Dr. Peeke, is when people don't get the diagnosis, and they think, well like people thought about my mother, "Well, Diane is just being difficult." So, I think that's what it is so important. If any of this sounds familiar, or if you feel like, "I read about autism", or "I read about different brain-based disorders and my daughter, my son, or my friend is showing the signs", get the diagnosis because, otherwise, you are not going to be able to help them or they won't be able to get the support that they need. That's how I feel about it.
PAM: I completely agree with you, Lisa. The other piece is you have got to be a really hard-core advocate for yourself.
LISA: Oh, yes.
PAM: Meaning that sometimes, my fellow brethren physicians, especially if its primary care, etc., might write it off to say, "Well, it's just that she's a little off, life is wonderful and go home." Whatever. You really have to be your own advocate and then say, "No. You know something. I need a more thorough evaluation of this." Really push for that. Find the neurologist. Find the specialist, the psychologist, the psychiatrist, whomever. But really do a lot of due diligence. Because at the end of the day, don't you think, Lisa, that is a huge piece of it? Because without that knowledge, how can you even begin to understand how to navigate. Right?
LISA: Oh, I completely agree. I also want to mention that there are mental illnesses in the book as well. Like I mentioned OCD there is also depression, and bipolar, panic disorder, and agoraphobia. I think that with all the stigma that's still out there, it is absolutely heartbreaking. If somebody has diabetes, they are not stigmatized if they are talking about taking their insulin. But if somebody has schizophrenia, it is like oh, they are a freak. Mental illness, physical illness, we need to treat it all the same so people can get the help they need.
PAM: Yes. And, it's really about practicing compassion with these people.
LISA: Yes. Definitely.
PAM: At the end of the day, look, you have a mother and you have a daughter. I mean they are a piece of you. They are bloodline. It's not like you can say, "This is too much. I'm out of here". You can't do that. Lord knows, the thought probably crossed your mind a few times. I mean, especially, when you get tired, you're sleep deprived. You're stressed out. You don't know which way is up and there you have it. I want to make sure everyone out there knows that I am talking to our wonderful brethren here at RadioMD, host Lisa Davis, and her website is www.itsyourhealthnetwork.com.
And really, get this book. Easy To Love, But Hard To Live With: Real People, Invisible Disabilities, True Stories. We've really been talking about how to be able to navigate this as a caregiver. At the same time be your own advocate. Get on out there. If you think something is wrong, you've got to dig down and deep and find that diagnosis, if there is one. Be able to work together with every resource that you have.
Lisa, I think that your book is not only incredibly unique. A fabulous read. It's got all of these essays, 35 powerful essays, from adults, and those who love them. It covers everything from autism to mental illness even to fetal alcohol spectrum disorders, ADHD, OCD, all of these invisible disabilities. Lisa, thank you once again, for being on HerRadio.
LISA: Oh, it has been my pleasure. Thank you.
PAM: Wonderful. I'm Dr. Pam Peeke for Michelle King Robson. Like us on Facebook, follow us on Twitter and stay well.