We recently spoke with Jessica Gimeno, author of the blog Fashionably ill: The Sick Woman’s Stylist. As someone who fights mental illness and chronic pain daily, Jessica is dedicated to helping people survive chronic illnesses with style and humor. Check out what she had to say!
Can you start out by telling us a little bit about your own health background?
I have five diseases. I was diagnosed with bipolar disorder when I was 18 and I’ve struggled with intermittent depression my whole life. MSNBC did a documentary about my journey with bipolar disorder. When I was 19, I got diagnosed with polycystic ovarian syndrome. When I was 24, I got diagnosed with myasthenia gravis, an illness that’s often confused with ALS, muscular dystrophy, or multiple sclerosis. That was very life-changing – my life took like a four-year detour. With the myasthenia gravis I got asthma, and then I developed psoriasis later.
Why did you start your blog and what has the response has been like?
I started Fashionably ill because I was working in the mental health non-profit world for years and what I noticed is that people tend to think their suffering is greater than anybody else’s. I would meet people that lived with mental illness that couldn’t conceptualize other kinds of suffering. So I wanted to start something for people living with both mental illness and chronic physical pain diseases.
Among people with chronic physical pain diseases – even people with no previous history of mental illness – 10% kill themselves because it’s that overwhelming, just the physical pain. When I started talking about bipolar disorder, people would write to me and say “this is my life – I have lupus and bipolar disorder, or MS and bipolar disorder, or Parkinson’s and depression, or Rheumatoid Arthritis and depression – and my story was never represented.”
There are a lot of tools for dealing with depression or bipolar disorder, but it’s much more complicated when you have a chronic pain disease. How do you get eight hours of sleep and go to sleep at the same time every day when you’re up screaming in pain? That affects your mood and it’s not like you can just talk to someone about it. It’s a lot more complicated than that, so that was the first reason I started Fashionably ill – I wanted this intersection of illnesses brought out in the open.
The other reason was I gained a lot of weight after I got myasthenia gravis – I think I gained 12 dress sizes in two years. I got insulted a lot about my appearance by people who knew I was sick. That was the crazy thing – people who didn’t know I was sick never insulted me about my appearance. They didn’t care. I realized that sick women don’t get a reprieve. Just like women in general – when we age, when we gain weight – it bothers people so much to see you change. I gained all this weight, especially in my face, and I didn’t know how to dress myself anymore. So I took all these notes for about three years – how to dress, how to put on makeup, how to do your hair, all this stuff. One day I was like “I should share this with people,” so I did that with the blog. Sometimes I give makeovers to sick people and sometimes I visit readers in the hospital. I like helping people feel good about themselves.
What are your feelings about the value of exercise for managing health?
One of the things that people ask me about is that they want a guaranteed way to lose all the weight they’ve gained. If you have a chronic illness, you’re on medication for the rest of your life and so it’s very hard to look the way you did before you got sick. You’re bedridden a lot, it’s hard to exercise, and so what I tell people is don’t focus as much on losing the weight – focus on how good exercise will make you feel.
When I got sick at a very young age, I exercised for health, that was part of it, but a lot of it was vanity too. Now I exercise because it makes me feel good, it’s good for my immune system, and it also helps with bipolar disorder and fighting depression.
So I tell people, whether you recover that original size or not isn’t important. Being able to feel your legs is a gift that not everybody has, so take advantage of it. There are people out there with myasthenia gravis who are paralyzed and I was close to being one of those people, so now I exercise with that in mind and it’s not all about how thin can I get.
I tell people: don’t exercise to try to look like a certain person, even if that person was you before you got sick, because that might not happen and you’ll be disappointed. There are long-term intrinsic benefits to exercise, so do it for your mental and physical health and you’ll feel better in the long run.
What has it been like to participate in public speaking events and how has that been different from the other ways you connect with people online?
Public speaking is great because you get to connect with people and see their faces. Let’s say 10,000 people read an article – 50 people might leave a comment. I’ve read life-changing articles and I didn’t leave a comment. Maybe I shared it on Twitter or Facebook, but I was too busy to interact with the author.
But when you give a speech, you see people react in real-time. Sometimes they introduce themselves to you afterward and you make a friend. It’s great to touch people’s lives and actually see them face to face.
You’ve written for the Huffington Post – what has that experience been like?
I wrote this one article called “Resilience: My Family’s Autoimmune/Cancer/Bipolar Journey as Remembered Through Four Pacquiao Fights” (I’m a big fan of the congressman-boxer.) It was telling the story of my family. When I got sick with myasthenia gravis, my aunt had stage 3 colon cancer and it was a very rough time because, potentially, both of us were going to die.
That’s when I saw my first Pacquiao fight. Boxing is a very brutal sport, but that’s what I relate to because what do you think living with a chronic illness is like? It’s brutal. In boxing, a lot of unfair things happen, and that’s what life with illness is like – anything can turn on a dime.
When I saw my first fight, I was bedridden with myasthenia gravis and my aunt had stage 3 cancer. We were watching Pacquiao against De La Hoya and it really resonated with me: someone who was born into abject poverty, is 5’6″ tall, but is the only fighter in history to have titles in eight different weight classes.
I got a lot of comments on that article – people with bipolar disorder, people with cancer, people with all kinds of different illnesses saying “I can relate to this.” Also, a lot of Pacquiao fans.
[tweet_box design=”default”]As someone who fights #bipolardisorder and chronic pain daily, @jessicagimeno is dedicated to helping people survive chronic illnesses with style and humor. [/tweet_box]
The craziest thing to me was that it was classified under sports, so I wanted to call all of my physical education teachers from elementary school to tell them I had a sports article on the front page of Yahoo.
Then the congressman (Pacquiao) was on HuffPost live a few weeks later and I got talk to him. I got of readers after that and at first, I was like “why are you following me?” I didn’t think what I did was that big of a deal – I’m not the one in the ring. But then people would tell me they had to meet me because they had someone in their life affected by cancer or bipolar and really liked the article, and were impressed that I was fan. It was another intersection. That was the biggest life-changing segment as far as meeting people.
You’re going to be giving a TEDx talk on May 28th – what is it about and what do you hope to accomplish?
My TEDx talk is about how to get stuff done when you’re depressed. I’ve worked with mental health non-profits for years and I’m grateful for all the strides we’ve made with anti-stigma campaigns and how much we’ve helped people in terms of getting diagnosed, but we haven’t necessarily shown them the tools to cope with everyday life.
Depression is the number one disability among Americans ages 15-24, preventing many of them from finishing school or being able to hold down a job. Corporations lose billions of dollars every year to employees who come to work depressed. They’re there, but they’re not really there, so they’re not able to work.
This speech is about giving people the tools to actually get stuff done. What do you do when you wake up depressed and the world keeps going? The world doesn’t stop, school doesn’t stop, work doesn’t stop just because you have bipolar disorder or clinical depression.
Readers who subscribe to my blog get a free depression tool kit and there’s more information about that in this speech. It’s got ten strategies for working with depression and also scripts for specific situations. Things like what to say if you miss a friend’s birthday party because you got depressed. How to ask a professor for an extension on a paper because you got depressed. How to ask your boss for accommodations.
That’s what I’m passion about: giving people the tools to get things done. It’s one thing to not be ashamed to have a disease, but it’s another to know how to cope with it.