Living With and Advocating For Fibromyalgia

If you are a person living with fibromyalgia, it is very likely that you are also affected by mental health. Due to stigmas and false perceptions about fibromyalgia, some people in the fibromyalgia community might argue this is not true. However, living with a chronic pain disorder can be mentally challenging for anyone. My fibromyalgia and mental health struggles were the result of inheriting poverty and a lifetime of emotional traumas at a very young age. While at a residential center for “troubled teenagers,” I was diagnosed as “emotionally disturbed”. However, I can recall the “disturbance” way before then. I still have vivid memories of “Little Milly” crying when her dad came home drunk, engaged in physical altercations, and when after bowing down on one knee to gift her a Susan B. Anthony coin, left and never returned. Chronic illness and adverse childhood experiences A study by the Centers for Disease Control found that adverse childhood experiences such as abuse, neglect, and other traumas affect brain development and increase a person’s vulnerability to encountering interpersonal violence as an adult and to developing chronic diseases and other physical illnesses, mental illnesses, substance-related disorders, and impairment in other life areas.1 Having survived more than a handful of traumas before I was “legally" an adult-I can totally relate to the CDC study. I plan to tell y’all more about the “interpersonal violence” I have overcome in a future article. Now back to “Little Milly,” the poster child for missed opportunity of not achieving equity early in life and the effects of under resourced opportunities. In elementary and middle school, I was an A student. Later, at the High School of Fashion Industries in New York City, I was being prepared to receive a “regents’ diploma.” This type of diploma is a "more advanced high school diploma” you get after passing rigorous testing. Growing up in one of the poorest neighborhoods in the West Bronx where “underperforming schools” were considered the “norm,” this would have been an extreme honor for me and my family. An impacted nervous system However, the alcoholism my dad, an evangelized Christian struggled with, the mental health my single mom inherited, and all the traumas I witnessed and survived while growing up are direct results of how trauma early in life impacted my nervous system. This vicious cycle of developing physical and mental illness also contributed to socioeconomic barriers that caused a long-term effect on my family. The inequities and health disparities of being born poor are known to impact up to 3 generations, that is how long it takes to break away from the cycle of poverty. Inequality and physical and mental health conditions A more recent study conducted by researchers at UCLA, found that “Low-income youth are more vulnerable to physical and mental illnesses which can lead to long-term health and socioeconomic impacts.”2 That study found that children from low-income communities were twice as more susceptible to developing long term physical and mental health conditions than children in higher income communities.2 The study highlights the missed opportunity of not achieving equity from the start of life, especially for Black and Latinx children. These are some of many reasons why at the Fibromyalgia Care Society of America, Inc, I am dedicated to taking a whole family approach to care. We must remedy the inequities at the root cause in order to harvest and grow healthier communities! [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] Never in my wildest dreams did I picture myself as a chronic illness advocate. Seriously, if you had told me as a kid that one day I'd be fighting for the rights and recognition of people with psoriasis, fibromyalgia, psoriatic arthritis, and endometriosis (yeah, I hit the jackpot), I would've asked you what you were smoking. But life has a funny way of throwing curveballs, and after being diagnosed with not one but multiple chronic conditions, I found myself thrust into the world of advocacy. Why? Because someone's got to do it, and apparently, that someone is me. From patient to advocate How did I become a chronic illness advocate, you ask? By accident, honestly. After spending a decade battling the healthcare system and advocating for myself in a world without the social networks we have today, I started connecting with others who "got it" on Twitter. It turns out I'm as chatty online as I am in person. But 180 characters (it would be a while until they upgraded to 280) wasn't cutting it. I needed more space to vent, share, and connect. That's how my blog was born. From ranting about my multi-layered chronic life and the aftermath of a botched hysterectomy, I found myself diving into a community of bloggers. The next thing I knew, I was reviewing products for people with disabilities and chronic conditions. Fast forward two years, and I'm contributing to the Social Health Network’s Psoriatic Arthritis Community. The last decade has seen me write for various health sites, participate in patient opinion panels, and so much more. It's been a ride, to say the least. The future of my advocacy What does the future hold for my advocacy work? Well, it's a bit like predicting the weather with my fibromyalgia—uncertain but always prepared for a storm. My focus shifts as my conditions evolve. I aim to produce content for all my illnesses during their awareness months, but sometimes, I zero in on one more than the others. But here's the kicker: chronic illnesses don't just need attention during their designated months; it's a full-time gig. As long as I can think and type, I'll be here, shouting into the void for those in pain. Tips for aspiring advocates-be you! Thinking about diving into the world of chronic illness advocacy? Here's my advice: Be real. Share your story, but never compare it to someone else's. Your journey is as unique as you are. Share what feels right, and have a chat with your family about what they're cool with you sharing. Start using your existing social media platforms; you don't need to spend a fortune to make a difference. And if you're looking for a place to start, join me and countless others at the Social Health Network. They'll teach you everything you need to know about advocating for your condition. Becoming a chronic illness advocate wasn't my life plan, but it's become one of the most rewarding roles I've ever taken on. I've laughed, cried (a lot), and made connections that have sustained me through my darkest days. So, here's to making the best of the hand we're dealt and fighting the good fight, one sarcastic comment at a time. Recently, I compiled a data analysis report. The data was collected through the Fibromyalgia Care Society of America’s (FCSA) application. It was important that I understood the needs of the 351 people waiting for our support and care. What I found was that 83% reported a traumatic experience.1 While many applicants reported multiple experiences, the most common traumatic event reported was sexual assault.1 Having survived an assault as a teenager, I understood the long-term mental impact. With that in mind, I decided to conduct some research in this area. What I found was that many survivors develop PTSD and that the symptoms can persist for several years. This also resonated with me as I am still working through unloading horrific remnants of what I survived. Key pieces of data 92% of respondents reported that fibromyalgia has impacted their mental health.1 The average timeframe for a person to receive a fibromyalgia diagnosis is 5 years. Experiencing pain, fatigue and cognitive impairment for several years with no explanation can take a mental toll on any individual. It is also well known that living with chronic illness and its co-existing symptoms can lead to higher incidences of social isolation, depression and anxiety.1 To add further insult to injury, 81% report living below the poverty level.1 “After finally being diagnosed, I am having issues managing my health in regards to my job. I left my career of 10 years because I couldn’t manage my health. I took a new role and I’m still struggling. I’m afraid I won’t be able to work much longer if I can’t figure out a solution. I can’t afford to be on disability.” - FCSA Supportive Service Waiting List Applicant Furthermore, 94% of the people waiting for the FCSA’s supportive service program are women, many of whom had vibrant careers and served as the matriarchs of their families.1 We all know the inequalities women face juggling work, family, household responsibilities and the “hidden load” of mental and emotional labor. Today, the origin of fibromyalgia still remains unknown Although, its acknowledgement can be traced back to the 1800s when a doctor in the United Kingdom described it as tender points.2 However, many recent reports have linked fibromyalgia to emotional and/or physical trauma.1 Those reports coincide with what I found in the FCSA’s data. Why is there a lack of resources and support? My personal experiences and the analysis of the data all lead me to question: Why does the fibromyalgia community still lack the resources and support needed? This social injustice adds further barriers and mental strife to people living with an already over-burdened nervous system. It does not allow us to help the millions of people whose mental wellness was impacted by trauma. Most importantly of all, it prevents many from maintaining their careers and forces families back into a cycle of poverty, which can take 3 generations to break free from. We must work towards revolutionizing care for people living with fibromyalgia! You can sign up to receive a copy of the Fibromyalgia Care Society’s waiting list Data analysis report here. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] ,After many years of trial and error with doctors, my axial spondyloarthritis (AxSpa) was under control with a prescription of biologics and physiotherapy. On paper I should have been sorted. Yet, pain and fatigue were there. At that time, I was struggling with poor quality sleep, light and disrupted sleep, and waking up feeling tired. During the day, I was experiencing poor concentration and low mood. The pain was diffused throughout my whole body, in the muscles of arms and legs, and in the soft tissue around the joints. I had other symptoms, too My mental health was not great either, feeling down of being tired and in pain on a daily basis. I would find myself exhausted after my commute to work. I had no stamina. It was hard to identify whether the physical symptoms were creating the low mood I was suffering from. Or maybe the mental health issues were there as a result of the diagnosis of AxSpa and did impact my sleep, leading to chronic pain and fatigue. Which came first: the chicken or the egg? I was diagnosed with fibromyalgia I recall one particular visit with the rheumatologist, I was still in pain and tired, and very little motivated in general. The consultant told me that considering the review of my AxSpa, I should not be in pain. It was then he mentioned to me that I may have fibromyalgia. I have never heard of this condition before. I had a sense of relief being told that my symptoms of fatigue, pain, and mood might be due to a secondary condition, which developed after AxSpa. However, unlike AxSpa, he said there was no specific treatment for it. He prescribed me some medication to get a better quality of sleep and reduce the level of pain, in particular nerve pain. It has changed my sleep for the better, I could finally catch up on the lack of sleep I have accumulated. The daily pain was going down as well. That was an insight that lack of sleep could be linked to my level of pain. Getting a good night sleep became a priority! I also needed to address my mental health Then I decided to address my mental health. I was unsure how dealing with my mental health would impact positively on my physical symptoms of fibromyalgia. Hearing consultants, particularly a neurologist from my work, saying that symptoms of fibromyalgia reported by a patient are known to have a psychological component, upset me. I took it as if it was all in my head. Now thinking back, I did not understand what this consultant meant. Today I can say, only talking for myself, that he was right. Through my local health community center, I managed to be referred to a counseling service. The psychologist who assessed me directed me to a specific program running at the community health center, dealing with chronic pain using CBT (cognitive behavioral therapy) and physiotherapy. It was a group work, meeting weekly over a period of two months. Each session was led by a therapist and a physiotherapist, and the time was shared between a short presentation and group talk about mental health, and a session of gentle exercise ending with relaxation and meditation. I learned different coping mechanisms for anxiety, stress, pain, and fatigue. It was just what I needed. I am now beginning to raise awareness for those who live with both AxSpa and fibromyalgia. It’s been a process to manage fibromyalgia It's been a difficult and yet great learning curve to understand what fibromyalgia is and how to cope with it. I have certainly raised my awareness about how to live better with it. I can now recognize when my lifestyle is unbalanced, and my symptoms are coming back. My secret is to catch it before it gets worse, by prioritizing the sleep and regular exercise, together with some medication for the pain. Now that my symptoms are managed better, I would like to share my story with others and help others live better with fibromyalgia. As a passionate advocate for those living with multiple chronic conditions, I've walked alongside numerous individuals facing ongoing health challenges. I've witnessed firsthand the difficult nuances of the healthcare journey in the United States. I humbly accept my role as a caregiver and work hard to make sure I listen just as much as I teach and I learn just as much as I share. Here are ten important insights for both individuals living with chronic conditions and their dedicated caregiver health advocates. 1. Empathy as a foundation Being a caregiver health advocare requires more than just knowledge—it demands empathy. Understanding the emotional state, fears, and hopes of those living with chronic and terminal conditions is fundamental to providing effective support. When I stepped into my role as an advocate, I quickly realized that none of the books I had read about illnesses fully prepared me for the realities of living with a chronic condition. 2. Education is key At the heart of showing up as the best caregiver I could be was recognizing that knowledge about my child's illness is an ongoing process. The doctors and healthcare professionals are still learning, so it's okay to question because we are all learning together. Both individuals living with chronic conditions and their advocates benefit immensely from staying informed and doing personal research. Learning about the condition, treatment options, and healthcare systems empowers advocates to make well-informed decisions and guide individuals through the process. 3. Clear communication Effective advocacy hinges on clear, open, and honest communication. Advocates must ensure individuals understand their condition, treatment plans, and any potential side effects, fostering trust and cooperation. It's also important to acknowledge that no matter how well-prepared a person is, there will sometimes be pushback and times when you shouldn't leave your loved one's side until a clear shift in care has taken place. 4. Navigating the healthcare system The maze of healthcare can be daunting for those living with chronic conditions. Advocates are pivotal in navigating this maze, assisting with appointments and insurance, and understanding medical jargon. There are times when we have to ask for help getting a claim paid or coded correctly. 5. Emotional support matters Beyond physical care, emotional support is invaluable for those living with chronic conditions. Advocates provide a listening ear, offer reassurance, and create a positive environment, bolstering mental well-being. Locating a good inclusive advocacy group can help caregivers and other advocates feel less alone in this fight. 6. Being a team player Collaboration is crucial in healthcare. Advocates act as a bridge between individuals, healthcare providers, and other support networks, ensuring everyone is on the same page for the individual's benefit. 7. Adaptability and flexibility Healthcare journeys rarely follow a linear path for those living with chronic conditions. Adaptability to treatment plan changes, unexpected challenges, and new information is a cornerstone of effective advocacy. 8. Self-care for advocates Caregiver advocates often set aside their own well-being while focusing on the care of others. Recognizing the value of self-attention and seeking personal support is essential to maintain resilience and balance. 9. Advocacy beyond healthcare settings Advocacy for those living with chronic conditions extends beyond hospital walls. Advocates can raise awareness, advocate for policy changes, and champion causes related to their loved one's condition. One of my favorite ways to advocate is to partner with other nonprofit organizations. 10. Celebrating milestones, big and small Every achievement, no matter how small, deserves recognition. Whether it's completing a treatment cycle or a positive medical report, acknowledging these victories fosters hope and resilience. Being a caregiver health advocate for someone living with chronic conditions is both a responsibility and a privilege. It's a journey marked by victories, challenging times, and immeasurable personal growth. To all those embarking on this path, remember your role makes an incredible difference in someone's life. Remember to stand firm in the belief that the collective effort of advocates and caregivers can revolutionize healthcare experiences for those living with chronic conditions, paving the way for a more compassionate and supportive system for all. As for me, while on this journey, I plan to continue advocating, continuing to care, and trying to make a difference. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]

Living With and Advocating For Fibromyalgia

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How My Struggle With Chronic Illness Unexpectedly Turned Into Advocacy

Fibromyalgia and Mental Health: The High Cost Survivors of Trauma Pay

Living With Fibromyalgia and Axial Spondyloarthritis: My Story

10 Insights for Those Living With Chronic Conditions and Their Caregivers

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