Considering the most recent celebrity to share that she lives with chronic pain – Lady Gaga, and how people jumped to conclusions as to what she is living with, I decided to point out here that to date, she has not said what her diagnosis(s) is besides chronic pain, if there is one that is more specific. She did say on an Instagram post dated May 31, 2015, “I still deal with bone inflammation from my hip injury two years ago”. She has also announced that she is dealing with PTSD from learning to live with chronic pain in our society and the struggle to maintain pain management.
Her postings on Instagram about having treatment for chronic pain seemed to spark rumors and make believe as to what is really going on with her diagnosis. I have seen ‘stories’ that say she has fibromyalgia, EHS Electrohypersensitivity – cause from exposure to microwave radiation from wireless technology, autoimmune diseases (lupus), synovitis – a painful inflammation of the joints, and others.
Here is the issue, Gaga herself only spoke of living with chronic pain for the first time about a year and a half ago, and then again, the last week of November 2016. She only has said it is chronic pain. Please stop putting a label on what she has until she announces it herself. We all want a spokesperson for our disease, but I am cautioning you from applying a label to her until she announces what it is she is living with. Also, consider that chronic pain is a possible primary diagnosis and they may be her actual diagnosis.
There are many rumors out there in the social media realm. Take Lady Gaga for example. She posted on her Instagram that she was having a treatment for chronic pain a few weeks ago. She had already let us know years ago, that her aunt died of complications to Lupus just before her 20th birthday. Lady Gaga’s most recent album is called Joanne and she created a song in her honor as well (Joanne). Her parents own a cozy little restaurant in New York City named after Joanne – Joanne Trattoria where I recently dined with my husband. It is a homey Italian-American trattoria owned by Lady Gaga’s parents & cookbook author Art Smith. Lady Gaga’s father Joe Germanotta recently released a cookbook tittle Joanne’s. It includes recipes they serve at the trattoria like celebrity Chef Travis Jones’ Nutellasagna recipe. I learned that their head Chef Travis also lives with chronic pain. Although Lady Gaga has said that her aunt died from Lupus and is raising awareness for the disease she has not stated publicly what she is contending with herself. She has only publicly stated that she has chronic pain and a few of the treatments she has used to help her with daily living to lower the pain.
When we put a label on anyone’s disease we start expectations on how they should live, what treatments they should do, what their prognosis is. We do this far too often, to ourselves, our specific condition community, our created view of how others outside of the pain community see us.
There are other celebrities that have come forward through the years with their medical conditions including Michael J Fox with Parkinson’s, Paula Abdul with reflex sympathetic dystrophy, comedian and social media star Nicole Arbour with fibromyalgia, Nick Cannon with lupus, and Morgan Freeman who has chronic pain. Each has had different receptions on that they are trying to live with. Pressures from their community to talk about it, yet when they do criticism for being able to make something of themselves despite their disease. When other celebrities/personalities see the reception can be awful in that disease community and even lose them jobs from those that don’t understand it is very discouraging for them to then speak up.
If we stop putting stigmas and labels where they don’t belong it will help the impressions we give others who do not live in pain. At this point most health people do not understand the daily challenges of people living with a chronic pain disease or relate to us. Jumping to conclusions about how another patient should be or act, or deciding for them what their diagnosis should be is not helpful. Imagine how uncomfortable it would be if someone told you that you must share your personal and detailed story the way they want you to share, or tell you to act a certain way so others don’t get the wrong idea about how bad a disease can get or possibly worse they make up your story for you.
Let’s work to not put our expectations of what others living with chronic pain should or shouldn’t look like. We all will look different, have different function levels, treatment options that are right for us, etc. with one in seven worldwide living with chronic pain diseases. It is a blessing when someone with celebrity status does speak up and share, but it is not a requirement for them to do so. They need to feel support from the community they are a part of and if we isolate them we cut them off, and future spotlight makers, from their willingness to share and help with education, research, and awareness.