Tuesday, May 05, 2009

A Letter to Andrea

I just want to share with you my gratitude for what you have given me. However long my ability to contribute to our campaign lasts (hopefully indefinitely) it is you who have provided the necessary catalyst for my finally engaging in meaningful activity. I've often wanted to be involved in some sort of activism, but lacked the belief that I could be effective. You've shown me what a person with a laptop and determination can do - in a matter of days, you've gotten your message to thousands of people, and I find that incredible and amazing. Your self-belief has allowed me first to believe in you, and then in our cause, and now in myself. You came along and provided me the forum and inspiration I needed to start doing something I have always doubted I could do. I am 34 years old, and this is the first time I've ever felt I could make a real, lasting impact on the world about something extremely important. My motivation stays strong as daily I see your efforts and the efforts of the others you have inspired to join us, and as daily I receive encouragement from those to whom our message has reached via my words and actions. I cannot express enough how much of a difference this experience is continuing to make in my life, and how the grandness of your vision expands my own. I can see lights in my future where there were none, the future that I'd stopped looking towards because of its uncertainty and emptiness. I feel like, no, I believe I can contribute, and make something of myself. You've sparked an exponential growth of possibilities in me, and that is the best gift I have ever gotten. I know it is early in our friendship and campaign, but look at the difference you have already made in the life of one sufferer. Your mission has not only succeeded in spreading awareness, gaining attention, and future research funding for CFS/ME. It has inspired this individual to fulfill her potential, and surely it has and will continue to have a similar impact on others. Thank you is not enough.


My Story of Invisible Chronic Illness

I've suffered from Invisible Chronic Illness (ICI) most of my life. That's right, even though I've only had fibromyalgia, myofascial pain and fatigue since 2003, clinical depression is also an ICI. My depression started at the age of seven, when my parents divorced, and my brother, mom and I returned to our hometown with the stigma of divorce and lowered income status hanging over our heads. Please note: my experience of my youth reflect my perspective, and I do not speak for the rest of my family.

When you are seven years old, you do not know what is wrong, just that something has changed. Not only had I lost my father, but my mother's two-job and social life more or less left me an orphan. I was provided food and shelter, rides and clothes, but truly do not have any memories of love. My childhood memories do not include times spent with my mom, nor hugs, kisses or encouragement. I don't know if this is accurate, and my mother prefers not to remember or talk about those times, which were surely marred by depression, fatigue and loneliness for her.

A child left without emotional support is a devastatingly neglected child. Survivors of childhood physical abuse say that the lack of love was what affected them most. Emotional neglect is under-recognized as causing serious emotional damage to children, who often grow up with low self-esteem, inability to understand their own needs and desires, difficulty with intimacy, and reduced capability of authenticity. In other words, clinical depression, and depressive personality disorder. Anxiety disorders occur regularly in cohort with depression. I suffered severe social anxiety for years after I quit drinking to make my social experiences manageable. I attended A.A. but always new that my alcohol dependence was merely a symptom of my pervasive anxiety and depression. These days, I struggle with an eating disorder: I use food to compensate for the lack of skills developed in childhood to deal with overwhelming emotions. With the help of my brilliant, compassionate therapist, I have been able to identify my emotionally neglected childhood as the cause of my struggles in life, including low-self-worth and what ignorant people usually call procrastination or laziness. At best, my lack of motivation is seen as a result of my depression. At worst, it is seen as proof that I'm a spoiled brat who feels entitled to have everything handed to me on a silver-platter. Nothing could be further from the truth.

Each year that goes by, I lament and feel guilty about my potential gone to waste. As a child, I was a high achiever - honour student, yearbook editor, MVP of the swim team...This was easy for me because I knew it was what I was supposed to do, what was expected of me. I never got in trouble, was usually a teacher's pet (unintentionally) and basically did my best to be a perfect little girl. Years of self-control and perfectionism not only left me unable to relax and be myself, but caused me to hate myself because I could never be perfect enough to receive the love and approval from my mother these efforts were intended to earn. I held my true self in so tightly, eventually it crushed, folded into itself, and hid away until the day it could safely re-appear.

Life with constant self-hate, self-criticism, self-denial and self-denigration is torture. I was convinced that I was absolutely unlovable and unwanted. I believed that I was 'different', a 'bad person', and that it was all my fault. Terrified of being revealed I lived my whole adolescence as a convincing persona - a teacher called me the 'most laid-back kid in the school' and a friend wished he 'had it all together' like me. Meanwhile, inside, I was in excruciating turmoil. I spent hours and hours after school writing journal entries analyzing myself and the people and world around me, trying desperately to figure out how to fix myself, how to fit in, how to be good. At the age of 14 I had my first real suicidal ideation, and these thoughts and intentions continued for the next 15+ years. In my twenties, I was unable to sustain the only employment I was qualified for, waitressing. I could not cope with the pressures of university at the age of 19, so dropped out second semester and began an on and off career serving food to people at various restaurants and bars. This job required me to be cheerful, friendly and confident, 3 things diametrically opposed to how I really felt. It was truly exhausting, and each time I obtained employment, I eventually had to quit as I was driven into one after another major depressive episode. I spent the unemployed times on social assistance, unable to get disability or even help making a case for it. I ended up, at age 26, hospitalized in a psyche ward twice in one year for suicidal depression. I completed two intensive group therapy programs, as well as shorter-term counselling and outpatient therapy. In January 2002 I completed the Core of Recovery program at Homewood in Guelph, Ontario. That program has helped me enough to stay out of the hospital since then, but did not improve my ability to work or take care of myself.

The following year, I had made some emotional progress and had hopes of further improvement. In March I contracted the very severe Norwalk flu virus, the end result of which was my current fibromyalgia, myofascial pain, and fatigue. I recall saying to my volunteer supervisor at the Canadian Mental Health Association: just as my mental health starts to get better, my body falls apart. In fact, many, many people with a long history of depression end up with fibromyalgia. In the summer of 2003, I was completely unable to sit up, stand or walk for more than a few minutes. I went to physiotherapy and while it provided some relief during sessions, by the time I got home, my pain was just as severe. I enrolled once again in university and was lucky enough to find and get health coverage for, a chiropractor who eventually made the fibromyalgia diagnosis. His treatments significantly improved my ability to function, so I could attend classes, even though sitting through them still caused me tremendous pain. My family doctor refused to prescribe anything heavier than Tylenol 3's with codeine, and amazingly I made it through to the end of my degree on that treatment regimen. I achieved my degree with 'distinction' and thoroughly enjoyed the learning experience. However, being an older student suffering from invisible illness and low self-esteem increased my social anxiety to severe clinical levels. I spent hours horrified and humiliated at the way I'd answered or asked a question, and was terrified when asked to participate in small groups on projects and do presentations. I felt, as I always had, like a complete outcast. Not only was I ill and older, I was overweight and stood out like a sore thumb against the backdrop of thin young women. Although a couple of my teachers recognized me as an intelligent student with experiences worth discussing, most of the time I spent gritting my teeth and re-living embarrassing social incidents in my head, over and over, like someone with PTSD (post traumatic stress disorder).

After graduation, I applied for disability, again. This time however, I knew I had no option but to fight for myself. I could not work, and I could not live on social assistance. While in school, I'd been given an ODSP loan and subsidized housing that allowed me to just squeak by financially. Once I was done school and back on welfare, all that changed. I did not have enough money to feed myself and had to accept help from my mother and even use a food bank. My initial disability claim was, of course, denied, so I obtained a Community Services lawyer, and enlisted the help of my family doctor. He got me quick appointments with a rheumatologist and fibromyalgia specialist in order for their diagnoses to appear on my Social Benefits Tribunal file. He took a written statement by me listing my symptoms and disabilities and re-wrote and signed it to include in my file. With the social anxiety, depression and constant pain, we were able to convince the Tribunal that I was indeed too disabled to work - but only for five years. In 2010, I have to prove it once again. Meanwhile, disability will not pay for any treatment whatsoever, and only some pain medications.

Despite my efforts and trying every narcotic and pain medication that's covered (prescribed by my pain specialist), my condition is actually worse at present writing. Over the last several months I have experienced increasingly frequent and painful symptoms of irritable bowel syndrome, due to the narcotics I have to take just to function at my current level. I have also developed new levels of fatigue, and spent most of the past of the month housebound and often bed-ridden.

I live alone, folks. I am unable to keep my tiny bachelor apartment clean, to cook meals for myself that follow proper nutritional guidelines, and can't afford the ingredients anyway. I struggle with so little money to pay my psychotherapist each month because she has helped me beyond belief to make such great progress in healing my emotional wounds. Thanks to her and my diligent, daily efforts, I am no longer depressed and my anxiety is not as severe. The SNRI Effexor has nearly completely eliminated the social aspect of my anxiety. I still am unable to relax, the muscles in my body are in constant tension unless I am doing a focused relaxation exercise, I'm hyper-vigilent and have an extremely exaggerated startle response. My current symptoms in this regard are very similar to those with PTSD, yet I've never been in a life-threatening accident or witnessed a catastrophe in person. I maintain, and my therapist validates, that my whole life I've felt bodily threatened, because I've felt so unwanted and unlovable and easily abandoned, that any sign of imperfection threatens the fragile relationships on which my life depended as a child (i.e. my mother). This is a deep core belief and psychological wound that I am struggling very hard to heal but not making much progress. The new medications coming out that help people with fibromyalgia and similar conditions are unavailable to me under my drug plan, and utterly impossible to afford. I spend some of my meager, meager income on supplements that I can't get prescriptions for but need - Omega 3 oil, calcium and magnesium, melatonin for sleep (I've struggled with extremely poor sleep and alpha EEG anomaly all my life, as well as nightly anxiety-themed dreams that sometimes have me awakening in tears). I have few friends, and none that live close that really understand what life is like with these disorders. I live alone and deprived of human touch, which is so thoroughly healing but unrecognized as such by those who take it for granted. My only daily physical contact is with my pets - a dog and cat without whom, I fully believe, I would not be here today.

Despite my suffering and so many years (15+) of extreme suicidality, I have survived and will continue to. I maintain the tiniest sliver of hope even in times of utter desolation, and have a curious and truly joyful spirit which will not allow me to give in or give up. I see my sicknesses and healing journey as my life path, and it has taught me so much that others could not possibly know, that I couldn't possibly regret it, for all my suffering. It has led me towards spirituality and wisdom, and now towards a greater purpose - helping create awareness and hope not just for myself, but for every single person on the planet who suffers, or loves someone who suffers, or who will, in the future, suffer from any Invisible Chronic Illness.

I would like to think that reading my story will create feelings of inspiration and courage rather than pity. Pity cannot help me, only positive action can. Despite everything I've been through, I am actually happier than most people on the planet. I know who I am, what I stand for, and what my priorities are. I am not yet able to live in the way that is most congruent with my values, but my journey is a process, a path, and the journey, not the destination, is and must be the point. I urge everybody to do whatever they can, whatever is within their means, truly, to help me and others like me along our healing paths.


I sometimes write things that I don't really mean or believe. These are not to be taken literally, nor as definitive statements about me or my beliefs. Thoughts and emotions are transient, and I reserve the right to change my mind, generalize, exaggerate, give strong opinions, or write other possibly offensive statements. I don't lie, but I may say something that's not true to check whether I believe it or not, or to make a point. Call it creative license. This is my blog, and do have the right to say what I want. I'm using it in creatively therapeutic ways. Whatever the reader may think of me and my words, please believe that my core intentions are always good and I never willingly hurt anyone.