The month of May is Fibromyalgia Awareness Month and also intersects with Mental Health Awareness Month. Throughout the month, it had me reflect on the unique impacts that navigating fibromyalgia has in relation to mental health.
When you look at the history it fibromyalgia, there was a span of time when the condition was considered a mental health disorder. Thinking about this has had me think about one of the commonalities that many with fibromyalgia face in receiving a diagnosis from a medical professional which is not being believed that their symptoms are real and that they are making it all up. While this may not seem relatable, this is also quite common with those who experience mental health conditions and although there have been more open discussions about mental health in recent years and breaking the stigma, on a larger scale, society as a whole has a long ways to go in addressing our mentalities towards mental health conditions.
This post will be looking at three commonalities that I've found that many navigating fibromyalgia, including myself, experience when it comes to the intersections of mental health and fibromyalgia.
Note that each person may have their own experience and that what is shared here can be a gateway to a deeper conversation with someone you love who has fibromyalgia or if you have fibromyalgia, I hope it may provide some support in knowing that you are not alone in what you may be experiencing.
1) Medical Gaslighting
This is a very common occurrence with those who have fibromyalgia or are in the process of receiving a diagnosis. When one's symptoms are not acknowledged and by-passed (including medical professionals, friends and family), over time it can cause a loss in self-autonomy and doubting the experiences of our bodies which can lead to overthinking, lack of self-trust, anxiety, depression, isolation and grief.
Personal Example: When I was in the process of getting diagnosed, I had spent several months going through many tests from blood tests to urine samples to MRIs, several urgent care and emergency room visits and throughout this time, there was only one doctor our of twelve who believed that what I was experiencing was real. She believed me but knew that whatever I was experiencing was out of her scope of practice since her focus was Primary Healthcare.
There were doctors who had told me that I was making up everything and that I should just go back home even though I went from being physically very abled-bodied to needing to use a cane or a wheelchair to get around and sometimes I also needed assistance in getting out of bed. Over time, I started doubting myself and the pain that I was experiencing. This self-doubt lead me to minimize my pain levels, stop asking for help until I needed to go to urgent care or the emergency room and sometimes believe what others had shared about my experience more than myself because it was told to me so often that it was not that bad. It's only the last several years that I've been processing how this has affected my mental health in more ways than just my physical health but also my ability to connect with those closest to me.
2) Grief
Navigating grief associated with chronic illness is multi-layered and an on-going process.
Some examples include:
Grief with the changes happening within your body
Grief over loss of relationships and connections
Grief over financial loss and impacts
Grief over loss of dreams and how the future may be
Grief over how the ways ableism has and will impact you.
Personal Example: Grief has appeared very nuanced throughout the 10 years that I've been navigating fibromyalgia. For one, I did not know I was even grieving until about three years in to I had gotten diagnosed. Although I resonate with and have experienced varying levels of grief with each of the examples, the two that I'll focus on is grief over the loss of relationship and the financial impacts that having a chronic illness has.
Grief over loss of relationships and connections: When I was first getting diagnosed, many friends faded away and one of my best friends had told me that she couldn't handle seeing me ill for an extended period of time so it would be best if we ended our friendship. Throughout the years, I've needed to cancel many plans and events that I've really looked forward to due to having flares and lengthier episodes and it has lead to the ending of friendships which has brought about many forms of grief mostly due to the fact knowing that if I did not have this condition, perhaps, these friendships wouldn't have ended. This again is related to ableism and societal viewpoints placed on disabled people who don't have this privilege and in turn, leads to grief, self-blame, shame and thinking we are not worthy of connection, which we definitely are.
Grief over financial loss and impacts: One of the things that I've been processing since getting diagnosed is how chronic illnesses impact finances. Due to needing to miss work, medical bills (having to pay for medical treatments and testing) and loss of social connections, it can come with major impacts to our finances compared to others who don't have this same reality. In opening my business close to 2.5 years ago, although I know people perceive me to have a lot of energy and be very busy, I also know that I am twice as behind compared to other entrepreneurs in growing my business due to needing to pace myself slower and building everything from scratch (meaning that my work outside of my business helps to fund my livelihood and invest back into my business). When I have to take time off of work due to having flares, it takes away from my earnings and then also impacts my business as I could
use those funds to grow. (This is being shared not to garner sympathy but rather look at the realities that those who have a chronic illness and have a small business face).
3) Isolation
Navigating fibromyalgia as well as other chronic health conditions can lead to social isolation which impacts one's mental health. Social isolation takes away from our ability to make connections with others which can create impacts on our mental health and how we navigate belonging in community. Navigating belonging in community is nuanced and also relates to how others view us and our health condition again, goes back to themes of ableism.
Personal Example: In processing my experiences of social isolation and also with some of the patients I see who are also navigating chronic illness, the ways that isolation impacts one's mental health is huge. When we've seen friends and people within our social circles due to how they don't want to see or cannot handle someone who has a chronic illness or seeing society at large bypass us and view us as unworthy, it impacts our ability to connect with others as over time, we can start to internalize these viewpoints.
We hope you found this information helpful and supportive. For those who are navigating fibromyalgia, what has resonated for you in this blog post?
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