The Countess of Devon, AJ Langer-Courtenay, first shot to fame on US television shows including My So-Called Life. After marrying her husband, Charles Courtenay, the 19th Earl of Devon, the Californian, 44, now resides in Powderham Castle, near Exeter.
The Countess has lived with fibromyalgia since her early teens and, here, ahead of her appearance at the Integrative Medicine Convention in London on October 13th/14th, she speaks to College of Medicine editor Joanna Tweedy about the realities of the pain condition – and the misconceptions associated with it…
Could you tell us about your initial symptoms and fibromyalgia (which we’ll call FM here) diagnosis?
My story, along with many fibromyalgia brothers and sisters, is a loooong adventure. When I was first diagnosed with FM at 13, I overheard the doctor explain to my mom that he felt I was “exaggerating it, playing it up”.
I was mortified and proceeded to hide my pain and symptoms as best I could for the next decade. I exercised, even though it hurt and became a chronic overachiever to make up for the fact that I was scared to slow down. Eventually, my adrenals gave out and I could no longer maintain any sense of normalcy.
At 21, I had chicken pox and sprained my back and the pain and symptoms spread with the virus. It became disabling and didn’t go away. I received the diagnoses again, along with prescriptions for five narcotic medications, none of which helped and instead made me feel I was losing my mind. I underwent surgeries, which didn’t help. I lost faith in western medicine who only seemed to drug me or cut me. Alternative therapies were my refuge.
I had trigger point injections, vitamin IVs; I found gentle forms of yoga, breathing techniques, Neuro Emotional Technique (NET), diets, visits to many chiropractors, hormone testing, Chinese medicine, acupuncture and Neuro Linguistic Programming (NLP)… God, that sounds like a lot! But remember all of these and more were spread out over a couple of decades.
BBC Radio 4 presenter Kirsty Young has spoken out recently about her own battle with fibromyalgia and singer Lady Gaga cancelled UK tour dates last year because of how the condition affects her ability to perform. How important is it that high-profile people speak out about it?
It’s important that all people become comfortable speaking out about chronic pain conditions. There is still much shame in society surrounding ‘invisible pain’ conditions, both physical and emotional.
The more honest and open we can be the more empathy and compassion will be available. It is a release to be fully honest, it is a healing act for the one speaking and can be empowering for so many listening, who are facing similar challenges, or who know people facing those challenges.
That said, I do find it reassuring every time high-profile people speak out. Most recently, Lady Gaga’s documentary took my breath away. I was stunned by the scenes of her pain and exhaustion.
Witnessing this fierce goddess of a warrior woman, in the familiar fetal position on the couch trying to figure out what the hell to do next… Lady Gaga’s voice, a voice that has always killed me, speaking about FM. I had to stop and breathe. God bless her.
There is a kinship I feel with others dealing with FM. An intimate, shared experience of love and pain mostly misunderstood by outsiders.
Although I’ve only just heard about Kirsty Young, I’ve been keeping her and her family in my thoughts as well.
Do you think there are still misconceptions about fibromyalgia?
Yes, many. It is an enigmatic condition with no “scientific” known cause, no known cure that presents itself differently in each person. It is hard to understand let alone explain, and people don’t tend to like things they don’t understand.
Historically, it has been denounced as a ‘wastebasket’ diagnoses and many people, doctors included, have had limited respect and compassion for the diagnosis.
Off the top of my head, here are a few common misconceptions that I have run across, that are still lingering: “It’s all in your head”; “there is a pill or a surgery that can make you all better”; “you just need rest”; “you shouldn’t exercise”; “it’s your fault”; “you just need to push through it”; “there is no effective treatment”; “the symptoms are unrelated and must be treated separately”; “only women get FM”; “people with FM are being selfish and trying to shirk responsibility”.
I was also told I probably wouldn’t be able to – or shouldn’t – have children (I had two healthy pregnancies and natural births!); and my favourite, “people with fibromyalgia are hypochondriacs”. These are false. Misconceptions can cause unnecessary shame and confusion.
The good news is that science is catching up with us and the medical world is now able to study soft tissue, fascia and brain functioning in ways that are giving clearer insight into FM and so many other conditions.
Much of what contributes to the symptoms of FM has, until recently, not been included in medical study. These days, factual data and studies that validate the condition and its symptoms are available to anyone interested.
Basically, science has arrived to confirm what our bodies have been telling us for ages. People with FM are becoming more empowered to speak out and speak up for themselves.
And how has your journey in dealing with fibromyalgia evolved to incorporate an integrative health approach?
On breaks from filming, I travelled continents to visit treatment centres for pain, to cultures with slower lifestyles, learned to surf, and relax, found massage therapists, and other hands-on healers that could feel what was going on and help me listen to and understand what my body was needing,
At 28, I finally met the Head of Rheumatology at the University of Southern California (USC), Dr Daniel Arkfeld, who helped marry the two worlds. He gave me my life back by being empowering.
Western medicine as part of the team, as opposed to the rival – what a concept!
What if the NHS was part of the team, as opposed to the single mom working her ass off to take care of everyone and everything on a tight budget and time constraints? What if the NHS was one player in a team of healthcare providers?
Alternative medicine, now commonly called complementary medicine, is responsible for improving results and offering sustainable preventative care. They will, in time, serve to alleviate pressure on the NHS. As with everything, we are better when we work together.
How do you manage the condition now, are there techniques that have enabled you to manage it?
I am still working on lowering stress in my life, which has been a challenge, especially since leaving the sanctuary of California. I’m still finding the best hands-on therapists who specialise in massage, myofascial release, craniosacral work and kinesiology.
I have a favourite osteopathy clinic near where I live, Exeter Osteopaths, which is run by a great friend of mine who has been giving me support since I first came to the UK 17 years ago. I am also interested in functional medicine.
Gestalt therapists (a form of psychotherapy that focuses on personal responsibility and being present in the moment) have been helpful because the work is based on listening to your body.
I have always worked with a psychological therapist privately and take part in couples’ therapy to deal with the inconsistency of FM, its effect on relationships and for being as efficient as possible with reducing stress and processing difficult emotions. Therapy also helps make sure no victimhood mentality sneaks in, which can be debilitating.
These therapists help me listen to what my body is saying, and keep track of what is going on symptom-wise and assist me in processing pain and symptoms that get stuck in my body.
I have learned to be present with my body and meditate regularly. I like Yoga Nidra (a yoga that focuses on the consciousness between waking and sleeping) because I can do it no matter what state my body is in, and I’ve been enjoying trying out different meditations with my daughter lately.
It’s important for each person to build a tool kit and learn to trust their body to tell them who to ring and when.
In the UK, I have found a gem of a GP, Dr Toh Wong, who is very supportive of integrative medicine and is the reason I am speaking at this conference. He helps me balance the best western medicine has to offer with alternative care modalities, like Dr Arkfeld did in California.
I make space to have quality time with my kids, husband, friends and community because social connection is very healing.
Exercise, I’ve found, has to be fun, so I find ways to surf, enjoy community classes of yoga/tai chi, walk/hike with friends, travel, dance and play. I don’t do all of these at once and pace myself according to what my body can enjoy.
My husband and I enjoy working out with a personal trainer once a week who helps monitor progress and keeps us both from pushing our bodies too hard.
Everything is more gentle these days, but it is impressive how much my body is capable of when I am having fun. I’ve also learned to enjoy being on my own, and respect my need to balance solitude with activities, work and social time.
Having FM in my 40s is not as big an issue because as we get older, people naturally deal with more health issues, pain and trauma, and I find I have a large amount of understanding and support to offer because of all my body has taught me.
Learning how to say no and having to back out of plans to look after my body is getting easier, the pay-off comes in the form of more quality time, better focus and better health. A happier me. People are also more understanding now that I understand more, and more forgiving now I forgive more.
Finding or creating a job that fully utilises my strengths, connects with my passions and assists me in affording to care for my own needs is another focus of mine.
And what hasn’t worked for you?
In regards to things that have not worked, there have been many, like restrictive diets, pretending not to have FM, abusive therapists/doctors, therapies that I was not yet ready for, unhealthy relationships and jobs, self-doubt, being hard on myself, isolation, etc.
The fact is that everybody will find their own tools that work, because our bodies, lives and pain are all different. The most important thing is not to push or add pressure, to learn to be unconditionally loving and compassionate. That is the biggest step and the healthiest. To relax and lovingly listen is the hardest step, but will make us more peaceful, effective and joyful in the long run.