Loving someone with fibromyalgia is a journey that demands empathy, patience, and unwavering support. It takes a strong person with a deep soul. With your one wild and precious life, you’ve decided to love someone who will be suffering for the rest of their own. Choosing that is to choose suffering to, on a level most will never understand. Fibromyalgia, a chronic pain condition, affects millions of people worldwide, making each day a physical and emotional battle. Surviving the condition is a challenge, but so is loving someone with Fibromyalgia. As a spoonie with over a decade of experience with this condition, and being in a community that has seen Tremendous Inner Power and heartbreaking loss, I wanted to share the harsh realities of fibromyalgia, the challenges faced by both the person with the condition and their love, spouse, caregiver, and why it’s crucial to understand that love and value extend far beyond physical capabilities.
The Unseen Pain: Fibromyalgia is often referred to as an invisible illness because its symptoms aren’t readily apparent. But make no mistake, the pain and discomfort it inflicts are very real. The constant ache, fatigue, and brain fog can be debilitating, making even the simplest tasks a monumental challenge. For those living with fibromyalgia, each day can be an uphill battle, and their loved ones witness this struggle firsthand. It is incredibly hard to love someone with fibromyalgia while watching them in so much pain that you can’t make go away and likely never will. There is no cure for Fibromyalgia and most do not have hope for one given the complexity of it and how little is still known. Advances in understanding are still happening but so far the treatments are limited and many see no benefits to them. To love someone with Fibromyalgia is to love someone who will spend their lives suffering, and you to an extent will suffer with them. All hope though is not lost…. because love is a powerful thing. Love is something some are willing to suffer for.
The Limitations of Fibromyalgia: Fibromyalgia doesn’t just limit physical abilities; it can shroud the future with uncertainty. Careers, social activities, and personal goals can be put on hold or even derailed entirely. Dreams are often shattered along with hearts. The condition is difficult to live with not just physically. Many lose dreams and some…. sadly many… lose love, and some can’t live with it at all. There is more and more coming out about the suicide rate that threatens the Fibromyalgia population. The limitations imposed by this condition can be frustrating, and it’s crucial to recognize that these restrictions are not by choice but a consequence of the relentless pain and fatigue. They can have a good day one day and a bad day for the next 3. They can have a few hours where they smile and pretend through the pain to be nearly normal but then pay for over doing it for a week. One of the hardest things for them though is not the loss of their dreams, but disappointing others, disappointing those who love someone with Fibromyalgia. No one wants to be a burden.
The Challenges of Loving Someone with Fibromyalgia: Loving someone with fibromyalgia comes with its own set of challenges. It means understanding that plans may often change due to the unpredictability of symptoms. It’s about offering a shoulder to lean on when the pain becomes overwhelming, and showing unwavering support when they need it most. It’s a delicate balance between encouraging them to keep pushing and knowing when they need to rest. Never though is it ok to criticize their effort or judge what they can actually do. Fibromyalgia has degrees of severity per person who suffers with it. Few can live their lives like before, some can still work and some end up bed bound the rest of lives and helpless in wheelchairs. All the degrees of pain can vary per day or moment even with very little warning. One day you are out to dinner with them, one day they are making breakfast, and the next week it is you making dinner and them trying not to feel badly about it. There will be times when you both feel badly. It doesn’t help the situation you know but… you are both suffering, and love lets you suffer bravely, strongly, vulnerably, together.
The Role of the Caregiver: Caregivers of individuals with fibromyalgia play a crucial role in their lives. They become the pillars of strength, offering not only physical assistance but also emotional support. The caregiving journey can be demanding, both physically and emotionally. Caregivers need to prioritize self-care to avoid burnout and continue providing the best possible support. Caregivers must know what fills their emotional, physical, and spiritual cups. It is a beautiful dance to behold, watching a couple struggle and succeed while surviving this condition. If one is looking for an epic love story, these are the kinds that should instill those big feelings of awe and wonder. It might look like a simple life, a sad life, and it can be, but for a couple dedicated to surviving it together, suffering and loving and finding joy together, it is truly an adventure.
Seeing those who are successful and loving caregivers is witnessing a hero story of old, they have such unrivalled grit, and they hold on emotionally tight even when they can’t even physically hug the one they love so dearly some days. When asked how they do it they tend to shrug and say something like “there was another choice?”. We know there was a choice and is something many can’t handle. Loving is easy, but the living and caregiving part… sometimes not even love can save such a relationship. Many choose to leave, I can’t say I blame them. Sometimes love can get you through anything and sometimes… sometimes you can love deeply but still have to survive yourself. You can not be all things to any one person. One of the sad stories that plays out so often though is the one leaving tries to vilify the one who can no longer do so much with them or for them… they seek to blame the person with the illness rather than face the reality of the choice they are making themselves. They can’t do it. That is so hard on both of you. Accept that Fibromyalgia stole this life from you as well and that you really believe you both are better off apart. Don’t make this yet another tragedy in the one with Fibromyalgia life. They didn’t ask for this any more than you did.
Sometimes though… sometimes love does win out! So it is a dance that the dear soul loving a person with fibromyalgia must make and if they are to succeed it is often in acknowledging the challenge and accepting the quest, together. The fact is that not everyone survives living with this condition, while it does not physically kill you, premature death is acknowledged as a result for some. It doesn’t have to be though, with the right support, and therapy, for both the person with the condition and their love, caretaker.
I will never be able to express my graditude and admiration for my husband who helped me fight the medical system trying to find answers. He struggled right there with me as treatment time and again failed. He suffered watching me try every fabled diet and tinture that might help. And he held my hand when I gave up. He held on to me when I thought there was no hope. He was still holding my hand when I finally accepted this was my life and I had to make the most of it not for myself, but for him and the kids and all those who cared for me. This all happened over a decade. This all happened while we held our children together and tried to give them all the hope that sometimes at least I, did not have. Sometimes I admit, I survived on their smiles and giggles. Sometimes I admit I cried for hours in the tub because we missed another homeschool field trip because of the pain. No matter how bad the pain is, nothing is worse than disappointing people I feel like.
The Strength of the Person with Fibromyalgia: It’s vital to recognize that the person living with fibromyalgia is not defined by their limitations. They possess a reservoir of strength, resilience, and courage. Despite the pain and fatigue, they often find ways to contribute to their relationships and society in meaningful ways. Their worth goes far beyond what they can physically do. The challenge is to see what they contribute… this can be hard for many. It can be hard for the person with Fibromyalgia, they know they can do less than their life before and have little hope of ever being that normal person again but chances are if you know someone with it, they are succeeding or struggling to find their value. Will you be someone who can see it or will you just see what they can no longer do?
Loving someone with fibromyalgia
In the end, Loving someone with fibromyalgia is not about apologies or regrets. It’s about acknowledging the battles they face daily and standing with them through it all. It’s about understanding that incredible love transcends physical abilities and that the person with fibromyalgia has an abundance of love, wisdom, and strength to offer. In supporting and caring for someone with fibromyalgia, we become witnesses to their unwavering spirit, resilience, and the profound beauty of their soul. In loving someone with Fibromyalgia one discovers their own incredibly force of will, resilience, and strength. It’s a love that’s deepened by adversity. It’s a testament to the power of love in the face of chronic illness. It is a more profound connection born from the challenges of the disease that is so much more than skin deep. It is epic love, with epic challenges.
May you always have the strength to live this story choosing to make love louder than the incredible pain.
– Kimberly, the spoony with 1000 naked feels.
