My Eating Disorder not otherwise specified (EDNOS) Nightmare PVNS and Recovery
Eating Disorder Not Otherwise Specified (EDNOS) is a serious mental illness. According to National Eating Disorders Collaboration website “40% – 60% of people who seek treatment for an eating disorder have EDNOS”. People with EDNOS commonly present with extremely disturbed eating habits, a distorted body image and an intense fear of gaining weight. EDNOS is the most common eating disorder diagnosed for adults as well as adolescents, and affects both males and females equally.
A Reader from Pakistan, currently in Barcelona is sharing her story of recovery with us. This is a story of a Young mother, of courage, determination, love and hope. She was a restrictive Eater and suffered from EDNOS for twelve years of her life. What made her Eating Disorder worst was her diagnosis of PVNS in 2010, (Pigmented Villonodular Synovitis), a rare bone disease that affected her joint and her hip. Her story gives out a very strong message of self-belief and hope.
Both Eating Disorder and PVNS are a silent disease and are horrible in their pure essence.
I’ve lived with an Eating Disorder Not otherwise Specified (EDNOS) for twelve years of my life. I never went on diet and I certainly don’t have body image issues. I just stopped eating and started cutting out all food groups from my diet. I also suffer from PVNS (Pigmented Villonodular Synovitis).
PVNS is an extremely rare joint disease that causes inflammation and overgrowth of the tissue in the synovial lining of the joint. Sadly, this disease is not really curable. The surgery provides temporary relief, but 80% of PVNS cases are reoccurring–my case being one of them. Experiencing PVNS is not only frustrating, it’s also life changing. In addition to physical pain and suffering, PVNS combined with Eating Disorder also causes depression, withdrawal, anxiety, hallucinations and strain on relationships.
I was always a popular beautiful girl in school. I thought marriage was an escape from studying and a reprieve from going to University. I was 18 when I got married. After marriage, I wanted to become a perfect wife and an ideal Daughter in Law. I have a pleasing personality and I cannot bear the thought of upsetting anyone. I excelled in my role as a perfectionist and won the hearts and minds of everyone around me.
The only problem I had was that I could not adapt to my in-laws Eating Lifestyle. Prior to marriage, my diet was a typical diet, which consisted of lots of Pakistani food. After my marriage, I was exposed to exotic delicacies, array of sea foods and varied world cuisines. I just could not eat any of those foods.
As time passed and my responsibilities increased, I became more determined and more focused on becoming a perfectionist. I would spend 10-12 hours making sure that all the food was cooked to the highest standards and that our house was immaculate and that everyone was well cared for. In all this process, I often forgot to eat, and even when I did sit down to eat, I would eat very very minimal. With time I became even more restricted in my diet, even our foreign holidays to France, Dubai, Spain, Germany, nothing could change my eating habits.
At the age of 19, I became a mother to a beautiful son. It was during these times, that I started experiencing pain in my hip and in my leg. I had ongoing knee pain since I was about 18, I wasn’t diagnosed with PVNS till 2010 in Barcelona. My eating got worst after the birth of my son and the pain in my hip and leg worsened. It was during those times that I went to see a doctor for my hip pain. He could not come up with a proper diagnosis and gave me pain killers for the pain. The consequences of neglecting my health and not eating properly soon started having an impact on my physical and mental health. I had a low blood pressure, low appetite and anxiety. This all had an impact on my son, who was withdrawn, quiet, under weight and a picky eater. For 12 years my PVNS and my Eating Disorder dominated my life. Throughout the years, my PVNS kept on flaring back up. There were very low levels of calcium, phosphorus and other minerals in my bones. The lack of calcium, protein, fats and Carbohydrates further exacerbated the problem. I could have spared myself so much of the suffering if only I had the courage to love myself my body and who I was. In 2007, the pain progressed to where I could not even walk. The family practitioner ran further tests and recommended bed rest. I simply could not sit still or lie still. I had to move around, cook, and maintain my rigid control over eating.
I was referred to various Doctors in Pakistan for further evaluations. PVNS is very easily misdiagnosed by Doctors. It was misdiagnosed four times in my case, by many different doctors.
In 2010, I was on a family holiday in Barcelona. My childhood friend came to visit me and pointed out that my Son had an exact eating habits of mine. My son refused all foods and he looked smaller for his age. My son was only six years old at that time. When my friend offered him snacks, he said, ‘tell my mama to eat as well’. This was a wake up-call. I started eating for the sake of my son and it was that time that I was diagnosed with PVNS.
When you Ignore your Body, what Happens?
For years I ignored the pain in my leg. My joints were stiff and my movement restricted with a burning pain around the joint area. I let it go untreated and it wasn’t till 2010, that I went to a specialist in Barcelona for a diagnosis. My knee had become so stiff I could no longer crouch or bend down. Sadly my PVNS was in its advanced stages, rendering the hip completely unusable, requiring a complete hip replacement. Last year I had a surgery, followed by 4 weeks of bedside recovery and 8 weeks of physical therapy. This is my first surgery in twelve years to treat my very rare joint disease. What made everything far more difficult was my Eating Disorder which made the surgery very invasive and the recovery time far more intense. After the major surgery, I refused to eat and I was threatened with a feeding tube by medical staff.
Cutting out Calcium and Protein and Fats was one reason why my bones became brittle. Poor nutrition impaired my daily health and wellbeing and reduced my ability to lead an enjoyable and active life. It contributed to stress, tiredness and other health problems
I pulled through and had to remind myself that my 9 year old son was waiting for me in Pakistan. Children copy their mother’s eating habits. My son is an exact copy of me. He is quiet, shy and struggles with eating. You have to be a positive role model for your children and this requires letting go your Eating Disorder and the behaviours.
There is a definitive relationship between osteoporosis and diet. The single most important thing you can do to prevent many bone related diseases is to take care of your diet and to incorporate some bone strengthening exercises in your life. Good nutrition leads to higher bone density.
Recovery = Happiness
I have done well. I pulled myself together, took care of my health, my body, my mind and my soul all in matters of week. While going through recovery, I secured a voluntary post with an International NGO as an Inter cultural organizer in Barcelona. I followed doctor’s instructions, completed my physio. I went back to Pakistan in January 2014 and I cannot tell you how my son’s face lit up at seeing me in good health. I looked well and felt good. I am back in Barcelona now and will be going back to Pakistan soon. I did let myself slip, when I was in Pakistan but then relapse is part of recovery. Every time I slip and I feel Eating Disorder is back, I remind myself of my worst days in suffering and I think of my son and this gives me courage to defeat my Eating Disorder with all the power in the world. If you’re suffering from PVNS and Eating Disorder then taking care of your body and eating right can improve your quality of life, smoothing your transition into survivorship.
It’s only nutrition that can improve your sense of well-being and your quality of life.Please do not allow any illness to bring you down. Take care of your health, your body and mind.