The Opioid Stigma Bandwagon: My Reaction to Gaga’s SuperSoul Interview

Lady Gaga has held my attention as a fan for more than several years. Each year she grows as a more outspoken advocate for mental health, chronic illness, and gives voice to groups that feel they don't have a seat at the table. She has inspired me in more ways than one, with her supportive disposition. She truly cares about her fans and she's grateful for how they have supported her along her journey, advocating Born This Way, a foundation that established "mental health first aid" for teens, and really is all about acceptance of who we are. And I am so here for that. I think it is wonderful when celebrities use their power for changing society's narrative on inclusion.

Gaga's album, Joanne, released in 2016, was my favorite album of hers.. The album was a mix of edgy, laced with emotional undertones about support and growth. The song, Joanne, is about her aunt who died of complications of the chronic illness lupus. Lady Gaga exposed a side of herself to the world I personally hadn't seen. To me, it was simply more relatable than her other albums. I always enjoyed her music previously. It is always entertaining and beyond unique. She is an extremely talented human.

The album, which I listened to on repeat, (some of my favorite songs being Joanne, John Wayne, Diamond Heart, Come to Mama), was a great "opener" to the documentary, Gaga: Five Foot Two, which would be released from Netflix the following year. Some of those songs pulled me through some dark times with high pain days. The documentary Gaga: Five Foot Two, brought me to tears more than once. It made me feel not so alone in struggling with a very lonely, physically painful and also mentally painful, invisible illness. (Hey and I'm also 5'2", so it was even that much more relatable!).

Fibromyalgia indeed does occur alongside anxiety and depression. How could it not? It was bold and brave of Gaga to let the world in, to see that dark and aching side of her daily battles, the sides we don't see before and after she is on stage. For this reason, I'll always have a gratitude to her for boldly stepping out and baring vulnerably her biggest challenges. The documentary, where she shared with us her struggles in having fibromyalgia (which she also terms as neuropathic pain, or chronic pain--she uses the terms synonymously in her talk with Oprah for SuperSoul. I do as well for those certain tingling, "pins and needles" pains).

Fibromyalgia, along with chronic pain, and other conditions such as endometriosis and IBS, as you likely know if you are here reading my blog, are conditions that I live with personally. The open look into the day of someone with an invisible illness, in the documentary, was indeed way overdue in the medical, mental health, and chronic illness/invisible illness community. Showing that a celebrity too can struggle with chronic issues, really humanizes the condition, and that it is not selective in terms of money, status nor age. It shed light on what chronic illness can do to our mental health, as a consequence of relentless pain and fatigue.

I believe many of the reasons that I have depression and anxiety is because of my fibromyalgia pain. Medically speaking, many physicians are unsure of where fibromyalgia and depression intersect. It was a long running discussion for many years with fibromyalgia, "Is it the fibromyalgia/chronic pain, or the depression that came first? Does the fibromyalgia/chronic pain result from depression?" Classic "chicken or egg" scenario.

In Gaga's interview with Oprah, on SuperSoul Sunday, which was released a few months ago, (I listened on Apple podcasts and then found the video on Facebook), she relates much of her pain, and seemingly her fibromyalgia, to PTSD from repeated sexual assault when she was 19 years old. Also being a victim of sexual assault, I know that the trauma that comes with this is very real. All of our experiences are different. I have heard this relation back and forth, between trauma and fibromyalgia, and how many researchers think that it may be tied into either emotional or physical trauma. However, they are not certain of it being the reason chronic pain or fibromyalgia manifest. It is a mere possibility at this point in research. And some of the research is pretty strong, so I do understand why Gaga brought it up, because when trauma is a factor, it becomes an important component in possible future health issues, physical and mental alike.

Here is a link to the video of her interview, on Facebook (I'm sure you can find it on YT if you don't have FB): https://www.facebook.com/SuperSoulSunday/videos/632901810850792/

 

For a long time, I have had difficulty walking around my school, getting to and from class. I have found ways to get around better though. Using the accessible shuttle is something my school considers a necessity for me and others with fibromyalgia. Luckily I go to a progressive school that sees fibromyalgia as a real disorder. Simply walking around my house a lot of days can be unmanageable. Pain medication has given me my life back in these aspects. While many days, medication is not enough to get me through, many days it helps. Shortly after starting on pain medication, I was able to start physical therapy, which I would not have been able to tolerate before.

Lady Gaga has brought light to mental health and de-stigmatized use of psychotropic medications. It is admirable that she has come out blazing a trail with trying to destigmatize mental illness. But she inadvertently ended up stigmatizing another illness of hers in the SuperSoul interview: fibromyalgia. Being a fan of Oprah Winfrey, I enjoy the deep insights she shares. However, taking what they say in this interview as fact, just because they have a huge platform, would be amiss. I have learned a lot in my bachelor's, 8 years as a massage therapist, regularly updating myself with scientific journals and articles, books published by well-researched physicians and health professionals. I am not a doctor, but I am a very experienced healthcare professional, and patient. I may by no means, have the access that Gaga does, to top medical practitioners, but I do have access to a few highly accredited doctors and other professionals. I have the right to share my opinion and start conversations about the toxic narrative on pain relief, and also call out what I hear as harmful rhetoric on the topic of fibromyalgia.

Lady Gaga weaved some pretty archaic narratives about fibromyalgia into her interview with Oprah. Many of which sounded like they came right out the mouth of a doctor who hasn't updated themselves in 20+ years on the topic with current research. After watching the video, my guess is that the medical staff she has in charge of her care, had educated her with the conventional, outdated fibromyalgia picture, sprinkled with a politically-correct perspective of "how to handle pain patients". I've heard the things she said in many different scenarios. I do believe it is irresponsible the way she discussed fibromyalgia and chronic pain in the light of relating them directly to mental illness. The way that she talked about her doctor's perspective on treating her. Her doctor saying to her smugly when she was in a flareup, "Well, you can go to the ER and try to get pain medication, but I will just tell them 'no'". I think her doctor may be medically gaslighting her. This is the only way she knows how to handle her pain, is to simply white-knuckle it. Many times she says, "I am in constant pain, head to toe, just sitting here talking to you". This is the reality I myself used to live in, and many days still do, until I finally received the relief of opioid treatment which a lot of days helps me push through and live my life more fully. I did not have pain medication for 7 years of chronic pain. And you know what happened? My depression and anxiety got worse every year. So yes, mental illness became the result of my pain, not the cause.

People tell me now how much better I seem to be coping, that I don't seem so down anymore. I've feared that if I credit my stigmatized medication, I will be (and actually already have been) shamed. I am not planning on being on opioids my entire life, but until modern medicine has made further progress for fibro-specific medication... medications that provide relief without horrible side effects, GI interactions, and even some of them adding pain, I am going to continue to use what I have the right as a patient to use. Medication for a very real and debilitating illness (and that's straight from an M.D.'s mouth). I've been tried on literally 20+ other medications in the last two years, seeing 10+ specialists, spent thousands of dollars spent on acupuncture, and all kinds of alternative methods, etc., I know better than anyone, that I gave my absolute best shot to the other less stigmatized treatments out there. But you better believe, if I've finally found something that works, with minimal side effects, I will hold onto that. Because living with pain, going to so many doctors appointments alone, always leaving with more questions than answers, and more bills, it was expensive and very difficult to find a doctor who took me seriously enough to prescribe me relief. I've had enough pain in my short 30 years, and I want to live my life each day without a constant fear and anxiety of having a flare-up. This does not make me (or you or someone you know on opioids) an addict. It means they are dependent on a medication to live a normal life, day to day. Just like someone who has a dysfunctional pancreas in diabetes, I have a dysfunctional nervous system, which is known as fibromyalgia.

In trying to break the stigma of mental illness, Gaga inadvertently put stigma on chronic pain and fibromyalgia, in particular, of which is already such a stigmatized illness. She infers that fibromyalgia is a result of trauma, and now she thanks God and says "Thank You for this pain". And she just feels the pain. I've been there. When doctors give you no choice. That is the only thing you can do. In the end, it seems she is instead voicing many of the doctor's voices and opinions, instead of that of the patients out there who truly need relief. A lot have been told by their physicians that their "pain is in their head", or they "don't know how to manage emotions/deal with the past", "work through their past trauma". Although she even says at one point, "I know some of you out there are going to say, 'Don't you dare tell me my pain is in my head' "...But that is what her conclusion is. She infers we need to be mentally strong, tough it out, get over it, and counseling will help you out of your physical pain essentially. Gaga says, "This is how we keep me safe (not giving her pain relief), "this is how I want to keep the world safe as well." "I don't want people in pain taking pain medication. This is not the way that this is going to work." "People will become addicted." She finally just ends it with, " just no narcotics". A pretty generalized and stigmatized statement.

So, I have so many problems with these statements she has made. First of all, we cannot take what Lady Gaga and Oprah say as automatic truth, they are not doctors, nurses, nor medical professionals, period. She describes that this the way that it is going to work for her, which I appreciate that she finally elaborated that. She says something along the lines of that "she doesn't speak for everyone and only is saying what works for her", yet she blatantly concludes with doing just that--speaking on behalf of everyone, with "just no narcotics." To shame others to not take specific, highly-regulated medications that are legally prescribed by physicians, most of whom are pain specialists, and are likely a last resort for many, is too generalized and misinformed.

Speaking as someone with fibromyalgia, chronic pain, endometriosis, and IBS, all of which are invisible to others (I don't currently use a cane, or a wheelchair, or an otherwise distinguishing characteristic of having a disability), it gets challenging to be in pain, day-in and day-out. People assume that because you look a certain way, you are a very healthy individual, like they are. Keeping a smile on, and managing an optimistic outlook is something that can't happen some days. For some people, living through it with the help of medication, and yes for some, pain medication, or opioids can change your life. I do not agree with the way this topic on pain medication was discussed on SuperSoul. The fact is, opioids are highly stigmatized in society right now already. Some of that stigma is understandable. These are medications that have the potential to ruin lives, and unfortunately, even worse in some situations. Many other things that are granted normalcy in our society also possess that power. And guess what also has the power to ruin someone's life? Pain. When pain is day in and day out, like clockwork, it is a powerful destructor. I am speaking as someone who has experienced the destruction of unmanaged pain.

While this may not be a popular topic, it warrants discussion, and a lot of it. Pain has the power to ruin lives, and yes, take lives. Many people, with fibro and chronic pain, who are in relentless pain and don't get access to proper relief, do end up taking their own lives. Studies suggest that those who are diagnosed with fibromyalgia specifically, have a higher chance of suicidality1. So much so, that I myself have received letters saying this exact "risk factor" as to why companies couldn't insure me for life insurance. That is how horrible they assume it is to be a patient with FM. Little do they know, life with FM doesn't have to be so unlivable. Yes, opioids are powerful in their potential to destruct many, but they also can make life manageable and doable for many, and I myself can say they have helped get me back to neutral most days.

Speaking on behalf of all patients with fibromyalgia, chronic pain and invisible illness is first of all, a very privileged position for Gaga to be sitting in. Secondly, her pain is her pain, it is not the pain of every person with fibromyalgia, not the same severity, origin, or pain pattern. Pain is subjective. Pain is not something someone can diagnose or observe. Pain is symptom, a very real symptom, of many lifelong conditions. It certainly is not something that people can know from an objective standpoint, including Oprah. I was personally offended by the way Oprah said in the interview that they "don't want people thinking Gaga is on drugs" in a very derogatory tone.

Some people are able to smile through their pain, it does not mean they are not in pain. Everyone also copes differently. The fact that Gaga has virtually unlimited resources, a tremendous amount of support, and staff ready at her disposal for relief of her pain, makes an enormous difference, compared to that of the average person. Most people cannot afford the top specialists in the world, the top doctors in the country/world, the most effective alternative treatments that she has at her fingertips. Gaga does have a big heart, and I believe she is trying to come from a good place. I know she has seen addiction in those she loves. I know how much she speaks of mental illness in herself and those she loves. And in the community she loves. But, that is not speaking for those of us with invisible chronic illness. Who need a more understanding voice for our struggles.

You want to find a voice that has been lost? Look at the chronic and invisible illness community. Most people hide their illness because they are scared of this very stigma. I have no doubt Gaga is feeling the stigma of her fibromyalgia, like most of us with it do. From doctors, medical staff, family, the list goes on. People who love you want to see you safe, whole and pain-free. But those who don't understand it, and are uncomfortable misunderstanding it, may gaslight us (a form of emotional and psychological abuse), telling us that it is in fact in our control, that pain has to do with attitude.

Minimizing the pain and saying it stems from mental illness is not only false, it is unfair to patients and doctors who are working tirelessly to destigmatize this very real condition, which is becoming more well-researched (although not nearly enough). It is sad that this was put out there, and that in trying to destigmatize mental illness, fibromyalgia and chronic pain that are treated with certain medications were indirectly stigmatized. If Gaga truly cares about mental health, she wouldn't be ostracizing the way people treat their pain.

For so many of us, we have certainly tried alternative treatments, natural remedies, including counseling and behavioral therapy. I certainly am not against those treatments, and in fact do them in tandem with my pain medication. I believe it's a full spectrum approach that works. My favorite book on the topic of fibromyalgia and recent research is that done, is by Dr. Ginevra Liptan, The Fibro Manual. I have linked the book on Amazon here:

https://smile.amazon.com/gp/product/110196720X/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1

 

I highly recommend those of you reading this be sure to put the book on your list. She talks about rehabilitation of symptoms with fibromyalgia starting with sleep, then digestion, then nutrition, and lastly medication options for the remaining symptoms that exist with the condition. She also at a certain point discusses pain medication, and how she does find opioids to be okay for use, and to aim to limit them to 1/3 of the time. In other words, trying to get down to using them 10 days out of the month would be ideal. Which some people are able to do. On that note though, some people aren't. And that doesn't mean we should ostracize, isolate, or discriminate people that do need those pain medications/narcotics.

The stigma surrounding people who need medication for pain, in order to get up in the morning, go to their jobs, school, take care of their kids, or just walk down the stairs, needs to stop once and for all. I want to link a few videos of which I have found helpful explaining to people the reason I take pain medication, the reasons it's not addiction, and the reasons that people do get addicted to things, whether it be opioids, illicit drugs, alcohol, sex, self-harm. The science behind addiction is much more complicated than chemical hooks. Those do exist, yes. But having a medical team behind you that supports that your pain is REAL, is of most importance. It is not a physical manifestation of your inabilities to cope properly. There are neurological studies that back this. The way the brain processes pain is different in those with fibromyalgia. You will see this if you read Dr. Liptan's book. We do NOT know what causes FM yet. There is only speculation, much of which is backed by decades-old research, instigated by rheumatology, which they are finding now is not even the specialty that should be treating fibromyalgia. It should be neurologists many believe.

All of this to conclude that while I think it is admirable for Lady Gaga to open about what has worked for her, she cannot make broad statements for saying what will and will not work for chronic illness or pain for others.

And that medication, any medication, if it helps you function and live your life, is legal, is okay for you and you do not have to feel guilty for needing it. If these medications are used responsibly, and under proper medical care, they can actually enhance some lives, even if just for a short while. We need doctors who understand that our pain is real, chronic, and can be absolutely debilitating some days, but they have the power to help their patients and not hurt them, if they are patient to take the time and treat us equally. And for those who are still stuck on the old bandwagon of shaming pain patients, the antidote to stigma is educating yourself.

I have included a link to my Chronic Pain playlist on YouTube. I highly advise that people out there who are new to these terms, or new to their or their loved one's diagnosis, properly educate themselves on what it is truly means to live with chronic pain and fibromyalgia, and need not just trust what celebrities, or a "friend of a friend" say.

https://www.youtube.com/playlist?list=PL1eRYUkETYl32toWgtPKg2G_7NZWMWZHD

 

References

1 Kelly, Janis C. (15 October, 2010). Suicide Risk 10-Fold Higher in Women With Fibromyalgia, https://www.medscape.com/viewarticle/730633

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