Updated: Aug 26
Fibromyalgia is one of the most debilitating conditions out there. It is an invisible and chronic illness that affects millions of people around the world. It can make even the simplest tasks seem like insurmountable mountains to climb. Since it is an invisible disease, it can be hard sometimes for other people to understand (or even believe) your physical limitations. Some people do not even believe it is a real thing: my doctor dismissed it for years before he started to take me seriously.
I started experiencing my first fibromyalgia symptoms when I was around 15 years old. For me, it started with unexplained back pain and chronic fatigue. Then came the dizziness, trouble sleeping and sharp pains that would come and go all over my body. I felt weak almost daily from the lack of sleep and constantly being in pain. Needless to say, that also took a major dig at my mental health and general well-being. I stopped going out with friends because I had to ‘’save my energy’’ for days when I had to work. I tried every OTC (over-the-counter, not prescribed) medication available but nothing really worked. Then my doctors started prescribing me anti-inflammatories and non-opioid medications. That did not really work either. Just before my diagnosis, I had a plethora of symptoms: widespread pain that felt like aching, burning, and stabbing in my muscles and bones, tender points that were painful to the touch (mostly my neck, my back and my hips), depression and anxiety, numbness and tingling of the extremities, excessive tremors in my hands, and cognitive impairment (known as ‘’fibro fog’’) characterized by memory loss and difficulty concentrating and processing information. My immune system was also shot to hell, I was sick constantly.
There is no definitive test to diagnose fibromyalgia, so doctors have to do it through an elimination process - but that can take a long time. For me, it took 9 years. It was debilitating to live all those years with so much pain and unexplained symptoms, with the added disbelief of my loved ones and employers. It is extremely hard to not have an explanation for all that pain, and at some points, I even started to doubt myself. Was I a crybaby? Was it all in my head? Surely, I must be making it seem worse than it really was? Finding out that I was not imagining all of these things, that my condition was real and that I was not the only person struggling with this comforted me - in some ways. This is why I wanted to shed some light on the daily struggles of people living with fibromyalgia.
Getting out of bed in the morning can be a real challenge because the pain, stiffness and sore muscles can be so intense that it takes several hours for the body to loosen up. This can lead to a lack of productivity throughout the day. Add to that factor the dread and anxiety of ‘’pushing yourself too hard’’ and having your symptoms worsen during the day.
Household chores such as cleaning, cooking, and laundry can be exhausting, making it hard to keep up with them. These tasks require a significant amount of physical energy for those suffering from fibromyalgia, and the pain and fatigue can be overwhelming. Something as simple as washing dishes can feel like an impossible feat. As a result, chores keep piling up and it seems like you can never do everything you want or need to do.
Personal care can also be a struggle for those with fibromyalgia. Taking a shower, getting dressed, and grooming oneself can be exhausting and painful. It can take much longer than usual, leading to a sense of frustration and feeling overwhelmed. I used to be really into makeup: I would spend hours creating a complex and creative look. Unfortunately, when I started having tremors in my hand, I stopped doing it because it just became too hard.
Social activities can be challenging. Simple outings like going to the grocery store, attending a family gathering, or meeting up with friends can be difficult due to the pain and fatigue that come with fibromyalgia. As a result, many of us often have to cancel plans due to the condition, and for me, that leads to a sense of isolation and loneliness.
I wish I could say it all gets better at some point, but unfortunately, there is still no cure for fibromyalgia. The only thing you can do is learn to manage your symptoms with exercise, a healthy diet, and meditation. It is crucial to learn your own limits and to show yourself some compassion, because the outside world will not always understand. Prioritize yourself and maybe take some comfort in the fact that while this illness is invisible, you are not. I see you.