I really want to tell you about my disease, but I don't want any sympathy. I just don't want you to look at me in that way some tend to do when a person gets diagnosed with a chronic disease.
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The festivities at my mom’s uncle’s 80th birthday were well underway. We had a great morning catching up with family and friends; many of whom we have not seen in a long time. My uncle’s house was perfectly built, except for the toilet, which was situated basically in the center of his enormous dining room. Normally not an issue.
Just before lunch, I stood in front of the toilet door at my mom’s uncle’s house. Awkwardly smiling at the family and friends who seemed to fill the room to its brim. In front of me stood the beautifully decorated tables lined with food. The smell of barbecued chicken, pork and lamb chops made my mouth water. Against the walls were chairs for the older generation. The younger ones were standing in little clusters near them; everyone seemed to be having a blast of a time.
The sounds of fibromyalgia
This happiness or hunger didn’t seem to last too long. From behind me, from the other side of the toilet door, a sudden mix of noises came pouring out, amplified somehow into the dining room. Grunts, groans, whooshing, and thumping which were only some of the sounds I could make out. The family must have heard her. They already know she had been in there for a long time.
My uncle, a tall man in his late 40’s, came towards me from the back of the room, a look of concern on his face. I felt like running, like fleeing and never facing people again. I knew this would happen someday. There had been too many close calls in the past, and my mum’s siblings weren’t idiots. I vowed to myself that this would be the last family gathering mum and I would ever attend. I had told her before that she should tell the family about her disease. But no, she didn’t want sympathy. She didn’t want people to treat her differently, or look at her in that way some tend to do when a person gets diagnosed with a chronic disease.
But this, this is unacceptable. I was only thinking about how embarrassed and uncomfortable I was always covering for mum’s unexplained behavior. Why should I be the one who has 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.”
My uncle said as he gently squeezed my arm before turning and walking back the way he came. I guess this wasn’t the first time he had suspected my mum was sick.
Out of my mom’s six siblings, four boys and two girls, her two sisters and one brother are the only ones still alive. My uncle, who is the youngest and my mom, the oldest, feels he has to take care of them all. But, it isn’t his duty. Mum is living with me, and I take care of her. Not him.
I lowered my head, wiped away the tear trickling from my cheek and waited patiently for my mother to finish up and come out of the bathroom.
No more lying for her mother
Finally, after what felt like hours and could well have been, the door opened, and my 64-year-old mother came stumbling out. I caught her arm and steadied her stance.
“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 she looked at me, and our eyes met, I could see the pain in her eyes. This pain wasn’t merely from the physical pain she felt, it also pained from having to face the reality of her diagnosis, and I felt my heart ache for her. I gently hugged her, and we headed out towards the patio.
Seated at the table in the corner where my uncle and two aunts. There were two empty seats for my mother and me. I helped my mother sit down before joining her. For a couple of minutes, there was an awkward silence in the air. They were waiting for an explanation, and I think my mother either thought the conversation would move elsewhere or she was trying to get her words in order before saying anything.
When I could no longer take the questioning stares and awkward silence, I blurted out: “She has fibromyalgia.” As the words left my mouth, I immediately regretted it. The silence that followed was worst even though I doubt any of them knew what fibromyalgia was. It is not a typical disease; it is a destructive one.
You see; my mother assisted with raising her siblings as they were seven kids and her parents both worked. She used to be a strong and independent woman, and she did not want to be seen any other way. I think this is why she kept her fibromyalgia a secret for over 15-years. Widespread musculoskeletal pain wracked Mum’s body; accompanied by fatigue, insomnia, memory and mood issues.
To her, talking about it or telling the family about the disease would break her character, it would make her seem weak, and she did not want to be. However, as there is no viable cure we had to consider other healthcare options. In fact, the doctors gave her five-years and said all they could offer is assistance with the pain.
My mother lifted her head, looked her brother and sisters in the eye and started.
“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 couple of seconds of awkward silence fell over us, and my mom 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 goes down my legs when pushing.”
I looked at my uncle and aunts as my mother told them more about the disease and what she has been experiencing. And, there it was, the sympathy looks, the ones she did not want.
My aunts both started crying, and this was drawing attention from the other guests, and I knew soon we would have everyone around us wanting to know what was going on, we had to get out of there and fast. My uncle, on the other hand, just 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.”
This comment made me angry. I burst out, almost screaming at them through my tears:
“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 that we are not trying.”
Everyone at the table, and even those close by fell silent and just stared. I felt my mom take my arm and as I looked down at her, I saw the tears streaming down her face and knew there was nothing I could do except to take her home. She needed to rest; the disease seemed to get worst when she stressed.
So, we stood up and left the family at the table. We left with saying goodbye.
Is fibromyalgia is a real disease? Yes!
Since then we haven’t been to any family gatherings. My mom is and has always been a strong, proud woman, a pillar of her family. All my life, if anyone needed something, or had something that needed to be done, she was always there. However, this disease has made her feel weak, and neither of us knew how to explain it adequately. People generally don’t even know what you are talking about when it comes to fibromyalgia. Some people may even question whether it is a real disease.
My rock, my anchor, disappeared when my mother was diagnosed. The emotions with looking after my sick mum are at times overwhelming for me; even just thinking about it, let alone talking about it. I feel guilty sometimes talking about my emotional pain. After all, she is the one with the chronic illness, not me.
Now, I am better at coping, but in the beginning, I used to cry a lot, even before I opened my mouth to talk about my mum. And these tears made so many everyday situations uncomfortable. Even now, so many years later, it still makes me cry when talking about it.