My mom has fibromyalgia. For over a decade, I helped her hide her chronic illness from family and friends. Then, at a family birthday party, I could no longer keep covering for her.
The festivities at my mom’s uncle’s 80th birthday were well underway. We had spent the morning catching up with family and friends, many of whom we hadn’t seen in a long time.
The house was perfectly built, except for the toilet, which was situated practically in the centre of the enormous dining room. Normally, that wouldn’t have been an issue.
Just before lunch, I stood outside the toilet door, awkwardly smiling at the people filling the room. Beautifully decorated tables were lined with food. The smell of barbecued chicken, pork and lamb chops made my mouth water.
The older generation sat in chairs along the walls. Younger relatives stood in little clusters nearby. Everyone seemed to be having a wonderful time.
Then the noises started.
From behind the toilet door came grunts, groans, whooshing and thumping, somehow amplified into the dining room. The family must have heard Mum. They already knew she had been in there a long time.
My uncle, a tall man in his late forties, approached with a look of concern. I wanted to run away and never face anyone again.
I knew this would happen someday. There had been too many close calls, and Mum’s siblings weren’t idiots. I had told her before that she should tell them about her illness. But she didn’t want sympathy. She didn’t want people treating her differently, or giving her that look people sometimes give someone with a chronic illness.
I vowed to myself that this would be the last family gathering we attended. In that moment, all I could think about was how embarrassed and uncomfortable I felt, always covering for her.
Why should I be the one who had to lie?
“Hi, there. Is your mom okay? She doesn’t sound good,” asked my uncle.
“Hi. Yes, mum is fine.”
“Really … She doesn’t sound fine.”
“There are some issues, but that is something you should discuss with her, not me.”
“Okay, tell her I’m sitting outside, everyone is worried, and it would be nice to know what’s going on.”
He gently squeezed my arm, then walked back the way he had come. I guessed this wasn’t the first time he had suspected Mum was sick.
Mum was the oldest of seven children. Of her six siblings, two sisters and one brother were still alive. Her youngest brother felt he had to take care of them all.
But I didn’t see it as his duty. Mum lived with me. I took care of her.
I lowered my head, wiped a tear from my cheek and waited for her to come out.
The moment I told the family
Finally, after what felt like hours, my 64-year-old mother stumbled out of the bathroom. I caught her arm and steadied her.
“Uncle is waiting outside on the patio for you,” I whispered in her ear. “The time has come, you have to tell them what is going on, they need to know.”
When our eyes met, I could see her pain. There was the physical pain, but also the hurt of having to face this conversation. My heart ached for her. I hugged her gently, and we headed towards the patio.
My uncle and two aunts sat at a table in the corner. There were two empty seats for us. I helped Mum sit down, then joined her.
For a couple of minutes, nobody spoke. They were waiting for an explanation. I thought Mum might be hoping the conversation would move elsewhere, or trying to find the words.
Eventually, I couldn’t bear the questioning stares and silence.
“My mom has fibromyalgia.”
I blurted it out.
I regretted it as soon as the words left my mouth. The silence that followed felt worse. I doubted any of them knew what fibromyalgia was, or how much it had changed our lives.
Why Mum had kept her fibromyalgia secret
With both parents working, Mum had helped raise her younger siblings. She had always been strong and independent. She didn’t want anyone to see her differently.
I think that was why she kept her fibromyalgia secret for so long. Pain affected her whole body. There was fatigue, sleeplessness, and difficulty with memory and mood.
To her, telling the family would make her seem weak. She didn’t want to be seen that way.
Mum lifted her head, looked her brother and sisters in the eye, and began speaking with a slight tremor in her voice.
“Yes, I have a disease called fibromyalgia. I have been living with it now for a couple of years. It started with cramps in my legs and arms which is one of the reasons I no longer drive or visit. Even walking sometimes hurt. Additionally, I have problems sleeping and…”
Another silence. Mum looked at me before continuing.
“I have also been struggling with my stomach. It has become tough to let go, and when it does happen, it comes with terrible pains and cramps that even go down my legs when pushing.”
I watched my uncle and aunts as she explained what she had been experiencing. And there they were: the sympathetic looks she had wanted to avoid.
Both my aunts began crying. Other guests started noticing. I could see how quickly we might end up surrounded by people wanting to know what was going on.
My uncle wanted to jump in and take over.
“We need to get a second diagnosis, I am sure there will be a doctor or some medication that will work; we need to explore our options.”
His comment made me angry. Through my tears, I burst out, almost screaming:
“You know she lives with me; I take care of her. This disease has not only changed her life; it changed my life too. Except for not going out much anymore, we have changed our lifestyle. I have started studying nutrition and looking for any method that could assist. It is not that we don’t want help or are not trying.”
Everyone at the table fell silent. Even people standing nearby stared.
Mum took my arm. When I looked down at her, tears were streaming down her face. All I could think to do was take her home. She needed rest, and stress made her symptoms worse.
We stood up and left.
We didn’t say goodbye.
Caring for my mum, and carrying my own feelings
After that day, we stopped going to family gatherings.
Mum had always been a strong, proud woman, a pillar of her family. Throughout my life, if someone needed something, or needed something done, she was there.
Living with fibromyalgia made her feel weak, and neither of us knew how to explain it adequately. People often didn’t understand what we were talking about. Some even questioned whether the condition was real.
When my mother was diagnosed, I felt as though I had lost the rock I had always relied on. Looking after her could be overwhelming. Sometimes even thinking about it, let alone talking about it, was enough to make me cry.
I felt guilty talking about my own emotional pain. After all, she was the one living with the illness.
I cope better now. In the beginning, I often cried before I could even open my mouth to talk about Mum, and those tears made everyday situations uncomfortable.
Even years later, talking about it can still make me cry.
