Fibromyalgia Psychology: The Burden of Invisible Pain Not Being Understood

What is fibromyalgia psychology, and why is being told nothing is wrong so tiring? Read about invisible pain, how others can respond and ways to get support.

"Your test results came back clear. You're as fit as a fiddle, touch wood." Many people with fibromyalgia who hear this sentence think the same thing to themselves: "If only that were true." Getting out of bed in the morning, every part of the body aches; in the middle of the day, fatigue rises up like a wall; and in the evening, sleep never quite restores. But someone looking from the outside sees none of this. Fibromyalgia psychology involves the weight not only of the pain itself, but of that pain going unseen, being questioned and being belittled. In this article I look at the emotional side of living with invisible pain, why being told "There's nothing wrong with you" is so wearing, how family and those around you can be more supportive, and where psychological support fits into this process. All decisions about diagnosis, treatment and medication should be made with the doctor who follows your care; what we are discussing here is the emotional side of the condition.

Fibromyalgia Psychology: What Does Living with Invisible Pain Mean?

Fibromyalgia is a chronic condition characterised by widespread musculoskeletal pain, fatigue, sleep problems and often difficulties with attention and memory. Its diagnosis and treatment are the domain of doctors. However, long before a diagnosis is made, and even after it, one of the heaviest experiences a person goes through can be "invisibility".

Everyone can see a broken arm; they sign the cast, open the door, carry the shopping bag. With fibromyalgia, there is no visible mark from the outside. A person who could go to the shop yesterday may struggle to lift a tea glass today. This fluctuation confuses those around them and changes the tone of the questions put to them: "But you were fine yesterday?"

The feelings people living with this condition frequently describe include:

• Doubting oneself. Someone who has been told "There's nothing wrong with you" for a long time may, at some point, find it hard to believe their own body. The question "Am I really exaggerating?" quietly wears a person down.
• Guilt. Cancelling plans, leaving housework half done and not being able to run with one's child in the park can create feelings of being a burden and of inadequacy.
• Anger. There can be anger that builds up towards the body, towards the people who do not understand, and towards years spent going from one doctor to the next.
• Grief. Things that were once easy becoming difficult, and the longing a person feels for how they used to be, resemble a quiet process of grieving.
• Loneliness. Not being understood can leave a person lonely even at the most crowded dinner table.

Why Is Being Told "There's Nothing Wrong with You" So Exhausting?

The burden of not being understood is perhaps the least discussed yet most decisive part of fibromyalgia psychology. Pain is hard enough; having to prove the pain every single time brings a second burden.

The experience of invalidation

In psychology there is a concept called "invalidation": a person's feelings or experience being ignored, belittled or judged to be wrong. Sentences such as "You're exaggerating", "Everyone has aches somewhere", "Go for a walk and it'll pass" or "You're overthinking it" can have this effect even when said with good intentions. Someone who is invalidated again and again eventually stops talking about their pain, and this deepens their loneliness.

The misuse of the word "psychological"

One of the things that hurts people with fibromyalgia most is being told, "Yours is psychological." This sentence is often heard as "You're making it up" or "You're doing it to yourself." Yet the fact that a condition has a psychological dimension does not mean it is not real. Stress, sleep and mood interact with the body in every chronic illness; knowing this does not require blaming anyone. The pain is real. Psychological support makes sense not because the pain is "made up", but because living with pain is hard.

The exhaustion of going from doctor to doctor

In Turkey, many people consult different departments and different hospitals before they reach a diagnosis. Long appointment queues, short consultations, telling the story from the beginning every time and finally hearing "Nothing showed up" can leave a person feeling helpless and angry. To make communication with doctors easier during this process, keeping a notebook that briefly records symptoms and good and bad days can help a person express themselves better and make the consultation more productive.

The Impact of Fibromyalgia on Daily Life, Work and Relationships

An adult living with fibromyalgia often tries to carry many roles at once: employee, partner, mother or father, son or daughter. Invisible pain can affect all of these roles.

At work: Even getting ready for work in the morning can take energy. Sitting at a computer for a long time or working on one's feet can increase the pain. The fear of being seen at work as "lazy" or "shirking" can lead a person to hide their pain and push themselves even harder. Whether to share the condition at work is a personal decision; if it is shared, it is usually enough to focus on the adjustment needed without giving detailed medical information.

Within the family: In extended family settings, especially during holiday visits or when there are lots of guests, comments such as "The daughter-in-law never gets up" or "Every time I look, my daughter is lying down" may be heard. These sentences magnify both the person's pain and their sense of inadequacy.

In a couple relationship: Partners also experience uncertainty. One day you make it to the planned dinner, the next day you cannot. The partner's disappointment and the patient's guilt can feed each other. Here, talking openly and seeing both sides' feelings as legitimate is important.

In parenting: Not being able to sit on the floor and play with one's child, or not being able to go to school events, can sadden a parent. But physical activity is not the only way to bond with a child; reading a book together, chatting and drawing also create deep closeness. Giving the child a short, age-appropriate explanation also helps: "Some days Mum's body gets very tired, and on those days we play calmer games together." This way, the child does not interpret the parent's tiredness as a lack of interest in them.

Different burdens at different ages

The weight of invisible pain also changes depending on the stage of life a person is in. For a young adult in their twenties, the hardest part is often the gap between them and their peers: while their friends go out at night and rush to job interviews, they have to budget their energy. The question "What kind of pain at your age?" is heard more often at this stage and makes it harder for the young person to believe themselves.

In midlife, the burden is mostly about responsibilities: work, children, ageing parents. A person can feel squeezed between being both a carer and someone who needs care. At times when the cost of living rises, the fear of losing the ability to work adds to this worry.

In later life, pain complaints are sometimes brushed aside with "That's old age, it happens." Yet an older person's pain also deserves to be taken seriously, listened to and assessed by a doctor. Rather than describing your older relative's pain on their behalf, giving them the chance to describe it in their own words during the consultation protects their dignity.

Your pain being invisible does not mean it is not real; being understood is not a favour but a basic need.

For Family and Friends: What to Say and What Not to Say to Someone with Fibromyalgia

The loved ones of someone with fibromyalgia often do not know what to do. The fictional examples below may help in building more supportive language.

Supportive sentences:

• "How is your pain today, and what do you need?"
• "You were fine yesterday and you're not today; I know it fluctuates like this."
• "If you want to cancel the plan, that's fine, we'll do it another time."
• "I believe you. If you want to talk about it, I'll listen."
• "Let me make dinner tonight, you rest."

Sentences that are better avoided:

• "If you did a bit of exercise, it would go away." There may be an exercise programme recommended by the doctor, but hearing it as advice from those around them can make a person feel blamed.
• "Something always hurts with you anyway." It presents the person's complaints as exaggeration or habit.
• "My back hurts too, but I still work." Comparison diminishes the person's experience.
• "Of course it hurts if you sit at home this much." It presents the illness as the person's own fault.
• "Drink this herbal tea, it did wonders for the neighbour's daughter." These are unproven suggestions; decisions about treatment are made with the doctor.

The most effective way to offer support is often consistency more than words: showing the same respect on a painful day and on a pain-free day eases the person's burden of "proof".

How Can You Support Yourself?

One dimension of fibromyalgia psychology is how a person treats themselves. Someone who has not been understood for a long time may, over time, begin to be harsh with themselves too. The suggestions below do not replace treatment; alongside medical care, they aim to make everyday life a little more liveable.

• Divide up your energy. Trying to get everything done on a day when you feel good can lead to a crash lasting several days. Breaking tasks into small pieces and building in breaks can be more sustainable.
• Pay attention to your inner voice. When the thought "I'm useless" comes up, think about what you would say to a friend in the same situation.
• Prepare a short sentence to explain. Giving a long explanation every time is tiring. A short sentence such as "I have a chronic pain condition, and some days are harder" makes setting boundaries easier.
• Connect with people who understand. Regular contact with one or two people who do not question you can reduce the effect of loneliness.
• Leave yourself room for enjoyment. So that pain does not take over everything, make room for an activity you love, however small.

For a broader framework, you can look at the article on the psychology of chronic pain, where the interaction of pain with thoughts and emotions is discussed in more detail.

When Should You Seek Professional Support?

Living with invisible pain can bring periods of intense sadness and anxiety. The following situations are a good sign that you might consider seeing a mental health professional:

• A lack of motivation lasting weeks, being unable to enjoy anything
• Withdrawing from almost all social relationships because of the pain
• Constant thoughts of worthlessness, of being a burden or of hopelessness
• Sleep becoming markedly disrupted even independently of the pain
• Worry about the pain taking up most of the day

If you are curious about the relationship between bodily symptoms and emotions, the article on psychosomatic symptoms may give you some ideas; however, this relationship does not mean your pain is not real. If depressive symptoms are marked, it is important to talk to your doctor and, if needed, to have an assessment by a psychiatrist. If you are having thoughts such as "I don't want to live any more" or an urge to harm yourself, please do not carry this alone; in an emergency, call 112 (emergency services) or go to the nearest emergency department.

How Is Fibromyalgia Psychology Addressed in Therapy?

Therapy does not replace the medical treatment of fibromyalgia and does not promise to "eliminate" pain. The aim is to support the person in building a more meaningful and less lonely life alongside the pain.

Cognitive behavioural therapy is one of the approaches frequently used with people living with chronic pain. Within this framework, the following topics can be worked on:

• Noticing catastrophising thoughts about pain ("This will never go away, my life is over") and developing a more balanced outlook
• Breaking the "all or nothing" activity cycle and planning to use energy in a balanced way
• Working with the anger and hurt left by experiences of not being understood and being invalidated
• Developing skills for setting boundaries and expressing needs in the family and at work
• Making room for grief over life before the illness and finding new sources of meaning

In some cases, a person's harsh inner voice towards themselves may be linked to patterns learned early on, such as "I must be strong, I mustn't be a burden"; a schema therapy perspective can help in understanding these patterns. Individual therapy offers a safe space for this work. On painful days when it is hard to leave the house, being able to hold sessions online can also make it easier for a person to continue the process.

Frequently Asked Questions

Is fibromyalgia a psychological illness?

Fibromyalgia is a chronic condition whose diagnosis and treatment fall within the domain of doctors; the pain is real. As in every chronic illness, psychological factors can affect the way the pain is experienced. This does not mean the illness is "made up".

My family doesn't understand my pain. How can I explain it to them?

Rather than long medical explanations, giving concrete examples may work: "Today even brewing tea tired me out." Saying clearly what you need also makes it easier for your family to help. If necessary, a family session can also be considered.

Will psychological support reduce my pain?

Psychological support does not replace medical treatment and cannot promise that the pain will disappear. However, many people say that as their coping skills develop and their emotional burden lightens, their everyday life becomes more manageable.

Why do I feel guilty on my good days?

On a good day, the thought "So I must have been exaggerating yesterday" may come up. Yet fluctuation is the nature of this condition. Good days and bad days are both real; both are part of your experience.

• #fibromyalgia
• #chronic pain
• #invisible illness
• #patient psychology

Yazar

Eda Erkan Alapala

Klinik Psikolog. İstanbul Kent Üniversitesi Klinik Psikoloji Tezli Yüksek Lisans mezunu; bilişsel davranışçı terapi, çocuk merkezli oyun terapisi ve çocuk-ergen psikoterapisi alanlarında eğitimlerini tamamlamıştır.

Eğitimler