Picture this: you’re 17 years old and the best soccer player in school. What most kids can only dream of, you can actually get it. Your whole life is ahead of you. But just before you go to college, you start feeling some pain in your back and joints. From time to time, the pain is so severe you start stooping. Even something as simple as walking becomes a challenge. And then, after visiting almost every doctor in town, you’re diagnosed with ankylosing spondylitis.
You don’t even know what that means, but the doctors tell you that you will experience chronic pain for the rest of your life.
This is the story of Saul Galavis, a 30 year old Venezuelan who suffers from ankylosing spondylitis, which is a form of arthritis that affects the spine. According to the Spondylitis Association of America, this disease “causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort”
But, for Saul, it meant the end of a promising soccer career:
“The pain started during the last year of high school, at just 17 years old. I was the best soccer player in my school, I really was”.
Currently, this condition affects more than 2 million people in the United States, and it can affect more than 1% of the male population.
Saul has a degree in psychology, but cooking is his passion. After graduating, he pursued his dream of becoming a chef. Currently, he owns two diners for school kids in Venezuela. He has agreed to tell his story and, more importantly, share his pain.
You were very young when you were diagnosed. How hard was it for you? After all, you were just a teenager?
When the pain started, I thought it was a “normal” pain, that it would go away easily. At first, I didn’t even know I had this particular illness. It is very easy for doctors to confuse it with Crohn’s Disease. I found later that my condition is more common in men than in women.
Did you ever feel that people didn’t believe your pain? That they thought it was all “in your head”?
People like to talk a lot. They thought my pain was physiological. When they started saying these things to me I even started feeling guilty! I started believing that maybe it was all in my head, that the pain wasn’t real. Sometimes, when my feet started swelling, I believed those people, thought they might be right.
After a few years, when doctors finally found what was wrong with me and diagnosed me with ankylosing spondylitis, I realized that it wasn’t psychological. I realized that this wasn’t all in my head, that I suffered from a medical, physical condition.
What medication are you currently using?
What doctors normally prescribe for ankylosing spondylitis is a medication called Humira. It’s great. It really helps you deal with the symptoms.
“But it is a really expensive treatment, almost 1.500 dollars a month. You need to earn a lot of money to fund a treatment like that. That’s why I had to suspend it, I just couldn’t afford it anymore.”
When I don’t use Humira, I start experiencing these episodes. The pain episodes tend to be more recurrent and last longer. Right now, I’m using cheaper medication. They’re not as good, but sometimes at least they help with the symptoms.
What are the symptoms you experience?
It normally affects my back, feet and joints. I know every patient is different, but for me, the worst part is when the pain hits the Sciatic Nerve. That is the worst pain of all. There’s no way to tune it out. These episodes, as I call them, can last for months if you don’t treat them on time. As the illness starts to progress, it starts calcifying your bones, and your joints get rigid. I have a friend with the same condition, he’s in his mid-40s. He is at a stage where he’s unable to turn his neck and his torso. He’s almost like a robot. It’s just awful. Maybe he started treatment when the illness was really advanced, because for me it’s not that serious. In his case, the illness developed faster.
Lately, I’ve had some trouble with my feet because they get really big and swollen, another symptom of the condition. The pain got so bad I couldn’t walk. I couldn’t even put my feet on the ground. You never think about it, but standing up means your feet have to bear all of your body weight. For me, that is unbearable.
For you, what is the most difficult part of living with this illness?
For me, the most difficult part is coming back after an episode. Returning to the day to day routine is a real challenge. The pain knocks me out for days, during which I have to stay in bed.
So when the pain finally goes away, getting up, walking, going to work it’s really hard for me. And this thing doesn’t just affect you physically, it breaks your spirit, too.
After an episode, I feel even worse emotionally.
“It feels like someone just beat the crap out of you and then you have to get up and act like nothing happened. I get into a heavy state of depression after an episode”.
And how is everything going with the diners? Are you still working full time?
I had to get partners to help me with the diners. As the condition got worse, I was unable to be “on top” of the business like I should. They are the ones in charge of the diners now. When the pain started to get really bad, I just couldn’t keep up. Last year was extremely hard for me, physically speaking. I started to feel really bad pain on my feet, heels and also one of my wrists started to swell. I couldn’t keep up with all the work and had to step back a little. Last year I switched my medication. I couldn’t afford the Humira so I had to get a cheaper one. Consequently, my feet and wrist where swollen almost throughout the whole year.
Have you ever tried cannabis for chronic pain?
Yes, I’m a regular user. It really helps me at night to calm the pain and for sleep. If I smoke some at night, then the next morning I don’t get up that tired or swollen. I’ve even noticed that it works as an anti-inflammatory. It reduces inflammation on my feet and wrist. I can’t say it takes away the inflammation, but it reduces it a little bit. I also use cannabis to reduce some of the anxiety that comes with the condition. Because I spend so much time lying in bed, I usually get really anxious.
“When I smoke cannabis, it helps me relax. I get so anxious being in bed all day I just want to get up and do things, but I can’t because of the pain”.
So, cannabis helps me calm down and relax.
If you could describe what living with chronic pain means to you, in one word, which word would you use?
A curse. For me, living with chronic pain is really a curse. When I was a teenager, I wanted to be a soccer player, a professional soccer player. And, as I told you before, I was really good at it. But this thing, this condition, this pain, it changes everything. One day you dream of playing soccer on a professional level and the next day you can’t even get out of bed because of the pain.
Looking forward despite chronic pain
Saul is now planning to move to Madrid, Spain. He wants to restart his treatment with Humira and get his life back together.
“I want to keep walking, hiking, exercise and travel more. I want to have a normal life again”,
he says. One of the most difficult parts of having chronic pain is losing hope. “It’s really hard for me to see or visualize a future. But going to another country could mean a fresh start. A new beginning”.