Easy to Love, Hard to Live With: Understanding the Challenges of Invisible Disabilities

Additional Info

• Segment Number: 2
• Audio File: naturally_savvy/1515ns3b.mp3
• Transcription: RadioMD Presents: Naturally Savvy | Original Air Date: April 8, 2015
  Hosts: Andrea Donsky, RHN & Lisa Davis
  
  Whether you are new to the healthy living lifestyle or a healthy living veteran this is the place for the honest answers to your questions, Naturally Savvy with registered holistic nutritionist Andrea Donsky and health journalist Lisa Davis on RadioMD.com.
  
  LISA: April is Autism Awareness month, so Andrea and I are going to talk about a book that I am involved in. It’s called Easy to Love but Hard to Live With: Real People, Invisible Disabilities, and True Stories it was edited by myself and Tricia Bliven-Chasinoff, MA. There’s a great Q&A with Henry Winkler and the forward is by Jennifer O’Toole, who is an incredible woman with Asperger’s. Matter of fact she, her husband, and her three kids all have Asperger’s syndrome.
  
  ANDREA: Wow, wow. You know what I want to know? Lisa, tell me a little bit about your book what inspired you to be a part of it and write some of it?
  
  LISA: Well, you know, I wanted to share my mother’s story. My mother had something called sensory processing disorder. Now, she never got a formal diagnosis but she would spend hours in the dark and she couldn’t walk on grass and she couldn’t drive on the freeway because everything was to fast and she had a lot of anxiety and nervousness and she ended up getting depressed because just doctor after doctor just said “Oh, you’re just hysterical. It’s all in your head. There’s nothing wrong with you.” Then, I have a daughter who is exhibiting many of the same symptoms and suddenly, then, at two and a half she got a diagnosis. Her first diagnosis she has a whole bunch of sensory processing disorders and suddenly, I thought, "Oh, my goodness. That’s what my mom must’ve had," and I talked to a bunch of OT’s and they’re the ones that diagnose it or you can see a neurologist. They all said, "Yes, from all the things you’re saying, it sounds like that’s what your mom had," and so the idea of somebody going through their life not being validated, not getting to share their story; having to pretty much live in shame and be embarrassed; not really understand themselves or have other people understand them made me say, "You know what? We need to do something about this." So, I didn’t want to write a whole book myself, so I thought, "Well, what could I do? So, I thought an anthology would be great because then I could look at any type of invisible brain-based disorder. So, it can be ADHD. It can be dyslexia, I mentioned there’s a great Q&A with Henry Winkler. It can be autism, a spectrum disorder and then, I thought, "Well, also mental illnesses too." OCD, bi-polar, depression, there’s a lot of things and the one thing I wish we had in here is PTSD, which we don’t. And if we ever do another book I think it’s so important. And the other thing that I love about the book is that you’ve got half of the stories are by adults with these issues and they get to share their own point of view. And then about half of the stories are by people who live or love people with these issues and it’s very interesting because honestly it’s challenging for everybody. (laughing) But there are so many great things, too, but anyways that’s…I really just…My heart breaks for my mother who died in her 50’s of ovarian cancer and never got validated, so I really want other people to have a voice and feel safe and get acknowledged.
  
  ANDREA: What about your dad? How was it even as you living with your mom?
  
  LISA: You know it was interesting. I kind of feel like my dad was, and he and I have spoken about this, I kind of feel like he was kind of in his own world. He was very self-involved he was the President of School Board, he was a marathon runner, he was a singer and an actor in community theater in addition to having a full time practice as an ophthalmologist and he wasn’t home a lot. He was like “Oh, I’ve got to go running. I’ve got to practice my…Oh, it’s another rehearsal.” And I’m like, "Okay. Your wife is hiding in her room. We’re her children talking care of her because she’s kind of inept in terms of the overwhelming emotions she had and you’re just kind of out doing your own thing." He’s apologized and he’s said, "I was selfish and I was young," and things and that but it’s still really hard for the kids when one of the parents is sort of acting like there’s nothing wrong or not wanting to see it, maybe.
  
  ANDREA: Now, is that something that she obviously was born with it? Did it get worse as she got older because she wasn’t diagnosed properly?
  
  LISA: You know, it’s interesting all these are genetic issues and there’s a lot of people who argue about, "Well, my child wasn’t autistic until they were 2 after a vaccine or this and that," but in my opinion and I’m not negating other people’s experiences, but my daughter came out and right away I knew there was something different. She had the alertness of a baby that was several months old at birth, she cried so loud and so often they wouldn’t let her stay in the nursery at the hospital. Luckily, I’m the type that wanted her with me, and then as a baby if the wind blew on her face she would cry, so I don’t know for my mother, but I know for my daughter it’s been since birth. Since then she’s gotten an ADHD diagnosis, something called NLD and something called PDDNOS, which is sort of like if you take the autism spectrum just go right above it, it’s like you have some of the factors but not enough to get the diagnosis I call it like “Autism-ish” that’s sort of what she has. And there are stories in the book by people who have PDDNOS and the other thing I want to mention, too, is that there’s some great advice from experts who really can look at the essays and then we ask them questions and what’s kind of cool is that some of the people in the book who have the experiences and have these disorders are actually the experts themselves because they’ve been able to find ways to help themselves. One of my favorites Brian Leaf and we’ve had Brian Leaf on the show. He used yoga and meditation for his ADHD and so, or ADD, and I just find it so interesting that you can learn from other people that have been there. And that’s the whole thing we don’t want to be, we all feel like we’re alone in it, but we’re really not. So it’s kind of like a support group and advice and support all in one place so I’m very obviously very proud of the book.
  
  ANDREA: Well, no! I’m very proud of you that you wrote it and, definitely, I think it’s something that people who have it themselves these, what would you refer to them as, are they disorders, disabilities?
  
  LISA: Yes, they’re neurological issues and, you know, it’s funny because I was torn to be honest about the title--Easy to Love, Hard to Live With. In some ways I felt like that sounded kind of mean but it’s part of a series there’s Easy to Love, Hard to Raise about children. There’s going to be Easy to Love but Hard to Teach, Easy to Love but Hard to Treat, I’m not involved with those.
  
  ANDREA: I think that’s a great title.
  
  LISA: Do you? Okay. So, I thought it’s hard to live with for the person living with it and then it’s hard to live with for the people that have to live with them but the invisible disabilities, I don’t see, I see it more as a challenge than a disability but that’s sort of the lingo the publisher used. I mean, I definitely think that for some people for my mother it was definitely a disability. For my daughter, she says she has learning differences. I haven’t told her, "You have ADHD. You have…," I mean, she has so many things and for her, she just says, "You know what? I learn differently and it’s okay and I react strongly to things and I’m sensitive and I just do the best I can," and, again, it’s raising that awareness and if you think someone in your family might have one of these, it’s a good idea to look into it and get some help, so they don’t feel overwhelmed and you don’t feel overwhelmed.
  
  ANDREA: Now, do you think your daughter will be able to function in regular society or will she always need care?
  
  LISA: Oh, yes, definitely/ I mean I think she’s always going to be quirky and I mean. I joke with my husband, she’ll probably be living with us forever. I can sort of see her living with us forever but going out getting a job. I don’t know. I mean kids can really change and grow and like all the adults in this book, they all had their issues. You know, I was listening to Henry Winkler in another interview and the host said to him “Oh, so you had dyslexia when you were a kid?” and he said “No. I still have dyslexia” and as a matter of fact I just did an interview on another show about adult ADHD. You know, it doesn’t look the same. It’s not about not being able to sit still. It’s about not paying your bills on time; not getting to work on time; getting so bored with the mundane things that you have to do and certain jobs that you just tune out. But then, having hyper focus in areas that you’re interested in. So there’s some really great stories about adults with ADHD and it helps with the misconceptions, too. I think about people always ask, "Well, is your daughter going to outgrow these issue?" and it’s like you will in some ways and you’re going to get coping skills. Like right now, I’m sort of… I sort of help her self regulate but I think as she gets older…Like the other day, this was impressive. She said to me “You know, mommy, I know I interrupt a lot but the thing is, if I don’t interrupt you I forget things really quickly so I know it seems rude but I need you to. If you’re talking to someone else I need you to say to them, “My daughter has some learning differences. She forgets. She’s going to interrupt and otherwise I’m not going to know what I said” and I thought, "Wow. That’s pretty mature to be able to be that self-aware," right?
  
  ANDREA: Pretty insightful, yes.
  
  LISA: Right. So, it’s like advocating for yourself.
  
  ANDREA: Hmm. That is pretty great. Very intuitive. And she’s in touch with herself which I think is really amazing, right? For her.
  
  LISA: Oh, yes.
  
  ANDREA: So, you know, this is such an interesting topic, Lisa, and I think everybody who is listening and everybody should really go and buy this book. Lisa, tell everybody what the title is again.
  
  LISA: Again, it’s Easy to Love but Hard to Live With: Real People, Invisible Disabilities, True Stories. You can get it on Amazon. You can go to itsyourhealthnetwork.com and it’s right there but it’s, you know, people that have read it who don’t even have people in their lives with these issues have been so moved and touched and especially if you do have people or you yourself are struggling to get encouragement and value. it’s a book of hope and that’s the really important message.
  
  ANDREA: Well, I think at the end of the day getting anybody help is amazing, right? So, Lisa, congratulations on the book. Everybody go and buy a copy. I’m Andrea Donsky along with Lisa Davis this is Naturally Savvy Radio on RadioMD. Like us on Facebook and follow us on Twitter @yourradiomd and @naturallysavvy.
  
  Thanks for listening everyone, buy Lisa’s book, and stay well.
• Length (mins): 10
• Waiver Received: Yes
• Host: Andrea Donsky, RHN and Lisa Davis, MPH