It’s no secret that living with a chronic illness like fibromyalgia is complicated and challenging – but sometimes it can feel like the expectations placed upon those who are ill totally ignore this reality. If you have fibro, you may have felt pressure at times to not complain, or to put on a smile around other people, even when you feel overwhelmed with physical and emotional symptoms. “Just think positive!” some people may say, trying to be helpful – but it’s just not that simple.
This pressure to think or behave in a certain way can be damaging, because if someone with fibromyalgia does experience thoughts or feelings they aren’t “supposed” to experience, they may avoid opening up or reaching out if they need help and support.
The reality is that those with fibromyalgia likely don’t have 100 percent positive and constructive thoughts 100 percent of the time. No one does – it’s part of being human. Having intrusive or “taboo” thoughts from time to time is normal, but it’s important to acknowledge and talk about them, as this can often be the first step towards learning to cope with and manage them.
For those who have intrusive, “taboo” thoughts about their fibromyalgia, we wanted you to know you’re not alone – so we asked our Mighty community to share ones they experience. If you struggle with any of the following, we encourage you to talk with a trusted loved one or medical professional. Your experiences are valid, and there is no reason to feel guilty or ashamed.
Here’s what our community told us:
- “I feel useless and a burden to my family/friends. I also feel like something is seriously wrong and has been overlooked and labeled as fibro. Often this makes me so anxious.”
- “Not sure if I’ll be able to stand getting too far into old age.”
- “‘Maybe, I am making it all up. Maybe, I really am ‘crazy.’ Is this how everyone else feels and I’m just a wimp?’… Am I the only one who thinks this? I know this isn’t true but sometimes I can’t help but feel this way.”
- “I don’t want to die but I don’t want to live this way. People make you feel like a hypochondriac and challenge your mental health so when we try to get help it’s always suggested that you’re not sick, you’re depressed.”
- “I have to remain in this dead end job because I can actually sit down and not have to worry about standing for hours. I’m stuck making such a small amount of money. Is this worth it?”
- “There are a lot of days where I’ll think, ‘This can’t get any worse, right?’ And then it does. I can’t get out of bed, I can’t concentrate on my schoolwork or anything for that matter because fibro fog is so bad and I just lay in bed and suffer because I can’t sleep due to the pain. I end up having to cancel plans with my family and fiancé and it makes me feel like shit. And they try to understand but I really think they don’t. It’s frustrating.”
- “Two thoughts actually: 1. Can I get a 103 or 104 degree fever so that I can not only look sick but also be on complete rest? 2. During a severe flare-up with intense pain, I feel that I have a better chance of being believed if it was say a fracture or a visible injury.”
- “There are days you ask yourself if all the problems and the pain are worth existing. People are great, experiences are amazing, life is not that bad, but yeah, there are days where all of it is not enough.”
- “Do I really have this as everyone else seems worse off than me? Closely followed by: will I just get worse?”
- “The degenerative aspect is difficult. I’m already having a hard time accepting my current limitations, and seeing how little I can still do, it makes the future very scary because what the heck more will I lose? I already feel like a burden and it won’t be getting better so I often think my husband will leave me, tired of being depended on and having to sacrifice so much for me.”
- “Will I ever be able to have a child like this? Is it even worth risking? How will I be able to hold my child for a long period of time when I struggle holding my keys?”
- “Maybe it isn’t actually fibromyalgia and the doctors are missing something really important. But by the time they find what it might really be, it’ll be too late to do anything about it.”
- “Learning what works to manage my flares took years. One of the things that help are pain meds but whenever I need them, I feel like I’m doing something wrong by asking. I will put off requesting what I need for days because I don’t want anyone to think that I’m drug-seeking or addicted. It makes me feel like asking for what I need is borderline criminal behavior and I find myself starting to buy into that line of thinking.”
- “Guilt. Feeling this way for decades, and the relief of finally getting a diagnosis, but knowing the guilt will never go away. The guilt of not being able to work full-time, not being able to do the things I used to like entertaining large crowds, organizing things, keeping up with the housework like I should, overdoing it then suffering for a few days in pain and fatigue. The guilt of extreme brain fog and headaches. Some days the brain fog and memory loss is so extreme I just want to lay down and fall asleep and not wake up. Today is one of those days.”
- “My spouse left me and I feel unworthy of love because I am sick. I am like hot house orchids, things have to be just so or I get sicker. I feel demanding or like I am a pain in the ass but I can’t help it. I worry about facing this alone.”
- “Sometimes I wish I was diagnosed with something else. Something with definitive testing and clear answers. Something that wasn’t invisible, so I didn’t feel like I was fighting for the right to take care of myself.”