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

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.