The Pain is Real | Living with Fibromyalgia

The Pain is Real

How many times have you heard something to the effect of “But you don’t look sick” or “Aren’t you better yet?” It can be exhausting and confusing even trying to think up responses that adequately convey the pain you’re feeling. But although people may doubt you or not understand you, your pain is real.

Strangers can sometimes be forgiven for not really knowing what fibromyalgia is. When you tell them you have this condition, they might vaguely know of the word and not much else. So it’s understandable for them to be a little confused when they look at you and see no visible signs of illness or disability. When they say “you don’t look sick”, it’s more out of ignorance than anything else.

If these type of interactions were the only ones we had to deal with, it would be annoying, but manageable. Sadly, doubting the legitimacy of fibromyalgia pain often comes from those who should know better – health care professionals, friends, family, and romantic partners. In the worst cases, it can even have you doubting whether your own pain is real.

Society

In terms of the general culture, things have been getting better with regard to fibromyalgia awareness. One major reason for this is the FDA approval of the prescription drug Lyrica for fibromyalgia pain. The TV commercials for Lyrica are blasted over and over to U.S. audiences in the hopes that sufferers will ask their doctor about the medication. This is a bit of a double-edged sword though; more people are recognizing the legitimacy of fibromyalgia as a medical condition, but they might be skeptical about the intentions of these pharmaceutical companies. Are they just pushing Lyrica, originally developed to treat epilepsy, to another market to make a quick buck? Are they encouraging doctors to over-diagnose fibromyalgia in patients just to sell more pills?

Another surge in awareness happened more recently: the release of Lady Gaga’s documentary “Five Foot Two” in 2017. There are several scenes in the film where she gives an intimate look into her struggles with chronic pain. Although fibromyalgia was not specifically mentioned in the film, she later came out and said that she has been diagnosed with the condition. Having such a high-profile celebrity speak out about fibromyalgia has really helped increase the awareness of the condition and its legitimacy.

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Medical Professionals

Of all the people who should believe and respect your fibromyalgia pain, health care providers (HCPs) are at the top of the list. Unfortunately, even today this is something that can’t necessarily be counted on. To be fair, most HCPs are knowledgeable and take your pain seriously. But there are some older but persistent ideas about the legitimacy of fibromyalgia that some in the medical community still believe. For a doctor trained in Western medicine, taking your illness seriously when all their blood tests and scans come up negative can be a challenge, even if that only manifests subconsciously in their attitude towards you.

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The problem is that fibromyalgia is a diagnosis of elimination; it’s only given when all of the other suspected illnesses are ruled out. Essentially it means that they can’t say definitively what’s causing your pain, so fibro is a convenient label to attach to it. Another term for this is syndrome, which is a constellation of symptoms that are grouped together because they occur together. Unlike a disease, there isn’t one thing that doctors can point to and say is the cause of the symptoms. Some doctors challenge this classification of fibro as a syndrome, but for now it’s most common designation of the condition among the medical community.

On the extreme end, some HCPs even call fibromyalgia a “trash can diagnosis” because of this. However well intentioned your doctors may be, if they all your condition a trash can diagnosis it can feel like they’re not validating the pain you’re feeling – almost implying that because they can’t understand where it comes from, that your pain is not real.

Friends & Family

It can be difficult for friends and family to understand that you’re in pain all the time. For example, I saw a post of Reddit recently where a woman was talking about how she was at home with her boyfriend one night when he asked her how she was feeling. She responded that she was in pain, to which he replied, “Is it fibro pain or is it real pain?” Understandably, she felt hurt because he was seemingly diminishing the pain she was feeling pretty much every day as her baseline for normal. Most people thought he was well-intentioned and just chose his words poorly, but even still a casual remark such as this can be hurtful to those suffering constantly from fibromyalgia pain.

There’s a tightrope fibro folks constantly have to walk when it comes to communicating their pain to friends and family. On one extreme, there’s a risk of coming across as a “downer” if you are mentioning your pain to others often. They might start to think that you’re “crying wolf” even when you complain about pain that’s exceptionally bad. On the other hand, if you never mention your pain to loved ones, they’ll never really understand what you’re going through. You’ll have to carry that burden all by yourself. Then if you finally do tell people about your condition, they could be surprised because you’ve had a lot of seemingly “normal” interactions with them in the past. It could be harder for them to take your continued pain seriously because they didn’t know you were in pain in the first place and on the outside you look just like how they’ve always known you.

There’s a bit of an age dynamic here too; young people are expected to have lots of energy and stamina, so if you’re in your twenties with fibro and feel like and 80-year old inside, no one will know unless you tell them. And even then, they might not believe you. All things being equal, people will treat you according to your age as they perceive it. It’s just an unfortunate fact that older people are understood to have more health limitations than younger people.

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Even your significant other, the person who should be most understanding, can slip up from time to time. They might see you functioning fine one moment, then lying down in pain the next, and wonder what just happened. It takes a lot of communication on your part to convey the fluctuations in your condition to your partner.

Personal Doubts

All of these external interactions can lead you to start questioning yourself. Is my pain real? How bad is it really? Am I just being over-dramatic? If you were diagnosed early in life like I was, you might not remember exactly what it felt like before fibromyalgia or know what a normal baseline level of pain is for most people. Being dismissed by others can really erode your self-confidence.

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Even to this day, I am hesitant to tell people about my fibromyalgia. Not so much because I  think my pain isn’t real, but because of how it’s perceived given all the misinformation out there about it. Even when I go to a new doctor for what I think is an unrelated problem, sometimes I won’t tell them about my fibro because of all the baggage associated with it and how it impacts their assessment of what’s happening to me. I’m trying to get better about this though, and it’s a big part of why I’m making these videos and writing this blog.

To reiterate, your pain is real. Your feelings of insecurity are real. Your feelings of invalidation are real. Being dismissed by doctors is real. And being misunderstood by your loved ones is real too.

So what have people said to you that made you feel that your pain isn’t real? Have you found any good ways to respond that might help others deal with those situations? Do you feel insecure bringing up your fibromyalgia in general?

Please share your answers in the comments section below.

References:

• The Fibro Manual by Dr. Ginevra Liptan (2016) http://www.drliptan.com/book/
https://en.wikipedia.org/wiki/Gaga:_Five_Foot_Two

The Pain is Real | Living with Fibromyalgia | Fibro Pulse (fibropulse.com) #fibromyalgia #fibro #chronicpain #chronicillness #spoonie #invisibleillness #choniclife #spoonielife

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