Hilary Greek is a 41 year old woman with lupus and fibromyalgia. As a Leader Against Pain for the National Fibromyalgia & Chronic Pain Association, Hilary shares her story to put a face behind the hidden scourge of chronic pain. This is Hilary’s story, in her own words.
Tell us about your journey to a diagnosis.
In retrospect, the first signs of lupus started when I was about 13, but the real pain started in October 2000, when I was 25. I lost 40 pounds in two months without trying. That was my first clue that something was really wrong.
The first doctor I went to said that I needed to lose the weight anyway, so it was nothing to worry about. Needless to say, I did not return to that doctor. I was working crazy hours, and I didn’t have time for doctor shopping, so I just ignored it for a couple of weeks.
Then the pain started in my joints, and I got an ulcer inside my nose which would bleed profusely every time I sneezed. I went to another doctor, but by the time I could get in, the ulcer had healed. This doctor suggested that I was depressed—I didn’t return to this doctor, either.
The pain got worse, not just my joints but my muscles as well. I was always tired, even after sleeping 8 or 9 hours. Over the course of 9 months I saw over a dozen doctors.
Finally I went to a dermatologist who took one look at me and said, “I think you might have lupus. Let’s run some tests.” A week later the results of the blood tests confirmed that the culprit was indeed lupus. That dermatologist referred me to the same rheumatologist that is treating me now, who also diagnosed me with fibromyalgia.
During all this time, the burning pain never stopped.
How do you describe your experience of chronic pain to others?
It felt as though I had been flayed, and all of my pain receptors were on the outside of my skin. My joints felt like they were packed with crushed glass and rusty nails.
“I cried myself to sleep every night because I couldn’t fathom another day of pain, and I cried every morning because I had to live through another day.”
Through a lot of work with a therapist, I have suicidal thoughts only on rare occasions, and they are fleeting things.
What do you want others to understand about living with lupus?
Every day is a struggle for me. Most of my schedule revolves around doctor appointments, physical therapy, dry needling, forcing myself to go to the gym and walk in the heated pool, yoga and getting a massage when I can scrape the money together.
I have so many medications that I have them in a spreadsheet. I am afraid that opioid medications will be cut off before safer alternatives become available. Thinking about attempting to survive without pain medication brings me back to a very dark place, and I don’t want to go there ever again.
I am not an easy person to be friends with. I never know how bad I’m going to feel from day to day, so making plans to do anything is a gamble. People get sick of me cancelling, and I don’t blame them. Eventually, they stop inviting me to things.
Now, most of my friends also have chronic pain, so they get it. I see my family and my husband’s family from time to time, and I enjoy it, but I can’t do anything physical. I have a wheelchair for places that require a lot of walking. Luckily, my husband doesn’t mind pushing me around.
How did your illness affect your work life?
I managed to continue working as an auditor of sorts for UPS Freight until the day before Thanksgiving of 2009. I made work my highest priority, to the point where I could barely drive home. I had to call my husband to help me get out of the car and into the house. I had gone back to college, but ended up having to drop out because I just couldn’t concentrate. This has been called lupus fog and fibro fog, and brain fog. If you add that mess to attempting to think through the pain, it’s no wonder my supervisor told me it was time to get on disability.
I was a very depressed and angry 34-year-old when I started on disability. Lupus, fibromyalgia, and the resulting chronic pain and cognitive dysfunction stopped my life in its tracks. I cannot go to school with my memory and cognitive issues. I have a hard time reading a Harry Potter book, let alone anything on the college level. I can’t even have a conversation with the television on. Career wise, I started at the bottom and worked my way up to over $40k a year with only a high school education. Unlike many people I know, I loved my job. I excelled at it, and I felt like I had finally got into the perfect groove for me.
“Then, my career, my education, my hopes, my dreams, my personal identity were completely gone.”
How did you get involved in chronic pain, lupus and fibromyalgia advocacy?
A few years ago, my sister-in-law suggested that I check out meetup.com to get some social interaction into my life, and I found the Richmond Fibromyalgia and Chronic Pain Association support group. It changed my life! I started meeting people from the group for coffee and I ended up asking the president of the chapter if she wanted or needed any help. Things kind of took off from here.
We had a Walk to Cure FM in 2015, and I found that I did have a lot to contribute. So much so that I was asked to join the National Fibromyalgia & Chronic Pain Association as a Leader Against Pain. I have also participated in every Walk to End Lupus that has been held in Richmond, even in a wheelchair, even when the weather was horrible.
What drives you to be a voice for those with chronic pain?
I don’t talk about it, but I am afraid that opioid medications will be cut off before safer alternatives become available. Thinking about attempting to survive without pain medication brings me back to a very dark place, and I don’t want to go there ever again.
When #ISpeakForPain I speak for those that are lost to us, I speak for every person that suffers in silent agony for fear of losing their job, I speak for every friend of mine that has been unable to access pain relief for any number of reasons, I speak for everyone else that has wished that it would all just end, and I speak for myself.