What Is A Typical Day Like for Someone Living with Chronic Pain

For those of you that wonder:

What is a typical day like for someone living with chronic pain?

Yesterday my friend Katie M. Golden published an article for online magazine The Mighty entitled “When Social Security Asked About My ‘Typical Day’ With Chronic Illness” in the article she perfectly sums up the imperfect world and typically non-typical day that those of us with chronic pain experience.

In her case the disease is chronic migraine and even though my disease is different the overall daily experience is quite similar. Katie was fortunate to get disability benefits which I was repeatedly denied. I was able to create my our atypical career.

Read her article and be sure to share and help us spread awareness for chronic pain conditions like chronic migraine. These illness are invisible but the pain is very real and very life altering.

Read the article here: http://tiny.cc/chronpain

Katie is a professional patient, writer for Migraine.com, US Pain Ambassador, patient advocate, speaker, freelance writer, and blogger of GoldenGraine.com

Visit US Pain Foundation to learn ways you can be an advocate for chronic pain

INvisible Beauty in Pain Artist Spotlight & Interview| Katie Golden

Our second INvisible Beauty in Pain Artist Spotlight features not only an amazing person and creative but a dear friend of mine. Her name is  Katie Golden.

The INvisible Beauty In Pain campaign’s second artist spotlight is Katie Golden

Katie is an photographer, writer, and blogger from Santa Monica, CA. She is a chronic pain warrior and writer for the website Migraine.com She has lived with Chronic Migraines for over 5 years and will launch her very own website http://www.goldengraine.com in December 2016. Katie graciously donated two photographs for our gallery fundraiser.

Check out Katie’s exclusive interview below:

When did you begin your career as an artist and what inspired you to pursue art?

(KG) The pieces I submitted were photographs. One of me curled in a ball (taken by Elisabeth Viilu Photography) and one I took while holding my grandfather’s hand as he lays in the hospital after major surgery. I don’t sell my photographs, but wanted to donate to this cause. I do, however, try to capture moments of my life that show the challenges I face through photos. Every year I put together a photo journal that chronicles my chronic life.

 Do you have a chronic invisible illness?

(KG) I have chronic migraine headaches. I am never without some form of head pain.

 When were you diagnosed?

(KG) It’s been 5 years since the attacks became chronic (meaning I have 15 or more migraines a month).

How old were you at the time?

(KG) My first migraine attack was at age 5. I experienced them episodically until I turned 30 when I had an attack that has never left.

 What lead up to your diagnosis (symptoms, dr visits, etc) and how did you find comfort through art, painting, singing, writing or being creative?

I’ve been living with migraine since kindergarten. But I will never forget the day that my headache specialist told me my condition was chronic. That diagnosis came after a year of testing and multiple failed medications. I’ve kept a diary since I was in 2nd grade. I felt compelled to write even more when I was diagnosed. I thought my writing might help others understand my disease and I was fortunate enough to connect with Migraine.com, who lets me tell my story. I had an “AHA” moment and realized that pictures paint a thousand words, so I began to take photos to go along with my writing. There are so many artistic ways to make an invisible illness visible.   

What do you feel is the most challenging aspect of your career as an artist?

(KG) Taking pictures has become a hobby for me and I would love to do more of it. Since I try to take pictures that depict my daily struggle, I often rely on my boyfriend to shoot when the moment strikes me. He’s a great “Instagram Husband.” He believes in what I try to do with sharing photos of my life.

How does chronic illness impact your process as an artist?

(KG) During bouts of illness, that’s when I feel most inspired to take a picture or write about what I’m feeling.

What (if anything) have you found/ done that has improved your symptoms?

(KG) Being active. Even when I’m in the hospital for a week long treatment, I get up and out of bed when I can. During a horrible migraine attack, I find that the sooner I get up and moving, the sooner the healing starts and the stronger I feel over my pain.

How open are you with friends & family about your illness & symptoms?

(KG) Once I had to stop working due to chronic migraine, I turned to writing about the disease. My family and friends read my articles and posts. They are invested in my health. I’m incredibly lucky to have a support system that I don’t have to put on a brave face for. They look out for me and I don’t have to feel guilty when I can’t make it to an event.

What was the worst advice that you followed?

(KG) I’ve been given a lot of horrible advice. Most of the time, I smile and say thank you. People’s hearts are in the right place. But I can’t say that I’ve followed any of the bad advice. I do my research, weigh the pros and cons and decide for myself what I should try or do.

Outside of art, What is your favorite way to cope with your life as a spoonie?

(KG) I LOVE spending time with my girlfriends and their kids. Even when I’m having a bad day, they light up my life. I can get exhausted very easily and keeping up with them can be a challenge, but I wouldn’t have it any other way. And besides the kids, my girlfriends are so supportive of each other. We lift each other up. Also, nothing can beat watching the sunset with my boyfriend. It soothes my soul.

What is it that inspires you to keep going, despite your illness?

(KG) I’m a driven person. It’s in my veins. Writing and connecting with others in the migraine and pain community gives me purpose. I can’t sit by and watch the world happen without me just because I have a chronic disease.

What is one thing you’ve learned about yourself since your diagnosis?

That I can adapt. I can live a fulfilled life with chronic migraine.

What is the most important piece of advice you would give to someone newly diagnosed with an invisible illness.

 (KG) You are not alone. There are so many support groups online and in person where you can talk to people who are going through the same thing.Also, finding the right treatment for you and your condition takes a lot of trial and error, which means having patience. The sooner you accept your illness, the sooner you will get to work on finding ways to cope with it.

Is there anything else you’d like the readers to know?

(KG) I believe in a balance of medication and self-healing measures. I love yoga and it has been a great way to connect with and listen to my body.

For the rest of KNOWvember, we will feature the biographies and the meaning behind the works of art created by and donated to the INvisible Beauty in Pain Gallery by each of the thirteen artists that submitted work for this campaign.

All works are available to be seen in person at 540WMain and are a celebration of The U.S Pain Foundation’s KNOWvember campaign which you can learn more about by clicking here.

To purchase one or both of the photographs above, email Calvin Eaton at asktheglutenfreechef@gmail.com and to learn more about Katie, visit https://migraine.com/patient-advocates/katie-golden