I have been very blessed in my life and have been able to come across some truly wonderful people. I knew very few people in high school who were dealing with a chronic illness. Once I went to college and it looked like my chronic pain was also chronic illness, I started meeting lots of other young people like me who lived on every end of the chronic illness spectrum: dealt with it for years, had just been diagnosed, had it completely under control, were in the hospital every month, and then everywhere in between. Having these friends provided a better support system than I could have ever imagined, and one that you can’t find in any other environment.
These positive experiences were partially what prompted me to be so open about my experiences online and to talk about my health as much as I do. And I’m not the only one. There are a lot of bloggers who talk about their experiences, some of them as the focus of their blog and others just as an explanation of what else is going on in their lives.
Today, I want to introduce you to one such person who I think is making a huge difference in the online chronic illness world: my dear friend Emmie. Now, you should know that I’m writing about Emmie because I want to. I want to share her message and what she is doing with more people. She did not ask me to do this. She is not sponsoring me. I think her message is so good and important that I wanted to devote a post to it. Now that that’s over …
Emmie started a Tumblr blog called Illness to Wellness to focus on her journey back to health this past year. She has had a whirlwind of a couple of years. While she started having symptoms 6 years ago – joint pain, stomach pains, etc. – they were all misdiagnosed as common ailments like growing pains and lactose intolerance. Then, in the 2012-2013 school year, her health got way worse. ER visits, horrible fatigue, GI symptoms … basically, the stuff of medical mystery shows on TV.
Finally, after a year of confusion and misery and no benefits, she started to get a real answer. Towards the end of the 2012-2013 school year, a student health doctor suggested that she might have fibromyalgia. In the fall of 2013, she got in with a physical therapist. “She was amazed at how strange all the results were when she did the evaluation,” Emmie said. This was one of the first times ever that Emmie made a shocking realization. “Not everyone experiences this much pain?” she laughed jokingly.
We’re sitting at my kitchen table after dinner, and while Emmie is telling me the details of her horrible years and everything she has gone through, she still has a smile on her face. Her tone is light and cheery, even when describing the hospital trip where she felt like her ribcage was on fire, was given morphine, ended up being allergic to morphine, and was carted around from department to department without ever given a solid answer.
But that cheerful attitude just goes to show exactly what kind of person Emmie is. And, ultimately, how it led her to started Illness to Wellness. At this point, she’s pretty certain things have gotten all figured out, and it looks like she’s dealing with fibromyalgia, chronic fatigue syndrome, GI functional disorders, post-traumatic stress disorder, seasonal affective disorder, depression, and anxiety.
Just, you know, a couple of things. No big deal.
While she feels good to have diagnoses and words to explain how she feels, it doesn’t change the fact that there is a lot she has to do in order to make her life truly enjoyable again. “I need to focus on myself first,” she says. And that’s not something easy for someone who used to put everyone else ahead. I would know just how her life has changed – I’ve been friends with her for 3 years, and she is my “little” in Vanderbilt University Concert Choir. I’ve seen everything she has given up, and I’ve lived my own version. And I can confirm that it isn’t easy.
She dropped many of the multiple activities she participated in and took up things like yoga and physical therapy instead. And, most importantly, she had to be very, very committed to putting herself first. Yes, she takes medications. But she also has found so many different ways to help herself that don’t involve medicine.
Some of these non-medical ways include: yoga, tai chi, physical therapy, aqua therapy, mindfulness meditation, meditation of five-minutes of deep breathing, learning how to not take on too much, blogging, starting a gratitude journal on her blog, reading a lot (especially self-help books to give herself a broad base of knowledge on her various conditions), lowing her activity load, and getting a handicapped permit for her car.
She has gotten a lot out of this. “I feel very blessed. Which is funny,” she laughs, “because it has been very easily the worst year. For some reason, it’s somehow working out okay. Not what I thought would be okay.”
As someone who has been through this journey, and is still on it, I can understand that 100%. When you first get diagnosed or are dealing with it all, you have an idea of what “okay” will look like. But sometimes what okay actually looks like and what you thought it would be are two very different things. And that’s okay. In fact, sometimes it’s actually better that way.
Emmie says, “It’s given me purpose. I know, I know, I am 100% convinced that I was born to be a social worker for kids with chronic illness. And I have never been so sure of anything in my life.”
That’s not to say that everything is sunshine and roses. She still has sad days where she cries about it and eats way too many sugary foods. But a part of the reason why she is so open about it all is to let the people in her life know that she’s not perfect and it’s okay for them to not be perfect in front of her. The biggest thing – and this is something that I feel really strongly about, too – is to let people know that they’re not alone going through it.
Since starting being so open on Tumblr and Facebook, Emmie has gotten a ton of messages. These range from messages like, “Because of you, I finally had the strength to tell my parents that I have an eating disorder,” to, “I’m not perfect, too, and thank you for sharing that.”
Experiences like these are why people like Emmie and me are so open. Because sharing makes a difference, and usually a positive one.
To top it all off, I asked Emmie what advice she has for people struggling with chronic illness, mental or physical. Know what she said? “Be kind to yourself and to others who don’t understand.” That type of kindness and love for everyone – you, people who get it, and, especially, people who don’t – shows so much about the type of person that Emmie is. And you obviously need someone like that in your life.