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 get 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 walking becomes a challenge. And then, after visiting almost every doctor in town, you’re diagnosed with a ankylosing spondylitis. You don’t even know what that means, but the doctors tell you 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, is a form of arthritis that affects the spine. According to the Sponylitis 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, 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 mayor degree in psychology, but cooking is his passion. After graduating, he pursued his dream of being a chef. Currently, he owns two diners for school kids in Venezuela, has agree to tell his story and, more importantly, his pain.
You were very young when you were diagnosed. How hard was for you being 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. 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 felt that people didn’t believe your pain? That they thought is was all “in your head”?
People like to talk a lot. They thought my pain was physiological. When they started saying this things to me I even started to feel 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 used to believe those people, that maybe this was all in my head. After a few years, when doctors finally found what was wrong with me and diagnosed me ankylosing spondylitis, I realized that it wasn’t me. I realized that this wasn’t all in my head, that I actually suffered from a medical condition.
What medication are you currently using?
What doctors normally prescribe for ankylosing spondylitis is a medication called Humira. Its great. It really helps to 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 es when I start experiencing this attacks. The pain episodes tend to be more recurrent and lasts longer. Right now I’m using cheaper medications. 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 out of it. This episodes, as I call them, can last for months if you don’t treat them in time. As the disease 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. And he is in a stage of the disease 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 disease was really advanced, because for me is not that serious. In his case, the disease evolved faster.
Lately, I’ve experience 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.
After an episode, I feel even worse emotionally.
For you, what is the most difficult part of living with the disease?
For me, the most difficult part is coming back after an episode. Returning to the day to day routine for me is a real challenge. The pain knocks me out for days where 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 affects you just 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 worst I was unable to be on top of the business as I should. They are the ones in front of the diners now. When the pain started to get real bad I just couldn’t keep up. Last year was really hard for me, physically speaking. I started to feel really bad pain on my feet, heels and also one of my wrist started to swollen. I couldn’t keep up with the work and had to step back a little. Last year I changed my medication. I couldn’t afford the Humira so I had to get a cheaper one. Consequently, my feet and wrist where swollen almost all 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 sleeping. 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 anti-inflammatory. It reduces inflammation in 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 laying in bed, I usually get really anxious.
“When I smoke cannabis it helps me relax. It get so anxious being in bed all day I just want to get up and to things, but I can’t because of the pain”.
So, cannabis helps me to calm down and relax.
If you could describe in one word what living with chronic pain means to you, what word would you use?
A curse. For me, living with chronic pain it’s 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 in a professional level and the next day you can’t even move from bed because of the pain.
Looking forward despite chronic pain
Saul is now planning to move to Madrid, Spain. He wants to star again treatment with Humira and get his life back together again.
“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 part of having chronic pain is losing hope. “It’s really hard for me to look or visualize a future. But going to another country could mean a fresh start. A new beginning”.