Fibromyalgia, a Disease Few People Know About

Por Ivett de las Mercedes

HAVANA TIMES – It’s very difficult to diagnose fibromyalgia, and very few people know about it.  Erlinda Gonzalez Roque (58 years old) has not only suffered chronic pain but she’s been misunderstood and discriminated against her entire career.

HT: When did you experience the first symptoms?

Erlinda Gonzalez: In 1982, after my divorce. I was depressed for a very long time. Some friends just thought the grieving period for the end of my marriage went on too long. One of the first symptoms was possibly how I found it impossible to adapt to this new reality. In the late ‘80s, I began to feel anxious, depressed for no apparent reason. Anything that required a little effort would exhaust me, I even woke up tired. My arms hurt and I began to suffer from insomnia.

An insensitive boss

HT: Did this situation have repercussions at your job?

EG: Of course, it was worse at work. I would often have a headache. My colleagues complained about my mood swings: when I wasn’t depressed, I was agitated. I became less efficient at work. I remember that, in 2001, I barely had a satisfactory performance evaluation. It didn’t only affect me, but the whole team. I didn’t realize that I had problems concentrating, at that time. My colleagues denounced my absence, saying they couldn’t count on me for any kind of project or activity. And they began to cast me aside. They stopped going for lunch and a snack with me. It was really hard. 

HT: What stance did your boss take?

EG: He became a tyrant. He constantly had an eye on me. If I came in a few minutes late, he took it off my paycheck. I wasn’t allowed to speak on the phone, he even checked my emails. One day, he shouted at me in front of all my colleagues in the office. He said he didn’t want to hear one more drama. That if I was so sick, I needed to show him a certificate or to go get an expert’s opinion. He never took the time to sit down and hear me out. I couldn’t understand when exactly it was that I stopped being a colleague and instead became a disposable object. I gave 15 years of my life to that job, I was dedicated and felt like I really belonged.

“My girl, you don’t look so good.”

HT: What did you do in the face of this rejection?

EG: I resigned. My colleagues were like family to me, but they never called me to see how I was. They called me crazy and cut me out of their lives. I felt misunderstood, betrayed and I stayed at home, brooding over my bad luck. Until a friend managed to get me a job in another company.

HT: Did you feel better?

EG: No, but people didn’t say things to me directly for a while. Everybody knew that I was there because of the director. One day, a colleague told me my dizzy spells, nausea and headaches were because of the canteen’s food. She said if I was having health problems, I should get them checked out. She also suggested that my neurastenia was probably my thyroid glands. And that if the doctors weren’t able to give my disease a name, I couldn’t carry on working there.

A neighbor showed concern

HT: Did you have anyone to talk to about this situation?

EG: I had a neighbor who had suggested I go see the doctor, a few times. She was a retired nurse and she always asked me if had already begun my menopause. One afternoon when chatting, she told me with tears in her eyes: “My girl, you don’t look so good.”  That was when I realized I couldn’t put it off any longer, and I went to the doctors’ the next day.

To tell you the truth, I was paralyzed, I felt awful, but I didn’t understand that it was so serious. I didn’t realize that somebody could feel bad without being sick. The doctor sent me to get all kinds of tests done, including a thyroid check-up (which came back negative). She decided that an appointment with a psychologist would be the best thing.

At that time, my muscular pain was already really intense. My neck, waist, jaw would spasm and cramp up. I was constantly crying, I thought I was losing my mind. I couldn’t understand how I had stopped being myself; I was always very active. I liked to take long walks with friends, go to parties, I got on really well with everyone. I never complained, I used to sing a lot, and I had become somebody else, all of a sudden. Even walking with my dog Lia, which is what I enjoyed the most, became torture. It was so painful to go up and down the stairs. I was lucky that the psychologist didn’t give up on me and she recommended I go to a rheumatology appointment.

Putting a name on the illness

HT: Was that when you learned about your disease?

EG: After many rheumatology exams, the doctor gave my disease a name. It was a relief to know that I wasn’t going mad and that I could treat it. The doctor explained that stress made it worse and that I needed to create a peaceful environment around me. She recommended including some aerobic exercises gradually, and then to do them always. To swim and keep myself busy with something I enjoyed, and also a type of injection, massages and medicine.

HT: Did you begin to feel better?

EG: Amitriptyline and Carbamazepine have helped me with my depression, neuralgia and insomnia. I believe that knowing I have fibromyalgia, the injections, massages and exercises have helped to keep me functional. That doesn’t mean to say I’m cured, because there is no cure for this disease. However, if I’m not depressed and my pain is in check, I can carry on with my everyday life. The most important thing is avoid stress, and I go to therapy when I can’t. My doctor is special. I don’t know how she does it, but she always says what you need to hear. She is sweet and compassionate, and I feel reborn when I come out of our appointments.

A new job

HT: Where do you work now?

EG: I’m a waitress at a cafe, but it’s only temporary. After COVID-19 finishes, I’m thinking about going to work for the State again until I can retire. Now I know that you can’t fall in love with your job, much less with your work colleagues. You don’t go to work to make friends, but to work. 

HT: How do you get by with medicine shortages?

EG: When the drugstore doesn’t have them, I turn into a wolf. I howl at everything and it’s impossible to understand this damned blockade. I’m convinced that if Trump was ever put in front of me, I would gobble him up in one go.

But when the fury passes, I walk around the neighborhood looking for someone who will swap or sell some pills. I’ve managed to do this sometimes, and when I can’t, you can imagine that everything I work for disappears. I wouldn’t wish it on anyone.

I recently read that yoga helps to alleviate the pain caused by this disease. Now that I only have one Amitriptyline pill left, I’m constantly fantasizing about going to live in India.

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