August 2007 - This is my current story, in progress and unresolved. I am telling it here because I am sure there are countless numbers of individuals who are living my situation or something similar. I don’t know if it will help anyone because I have no answers. My hope for resolution is very low, but I do hope, at least, that it will prove to you that you are not alone if you are afflicted with an invisible disability and I hope that it will inspire those of you who are not sufferers to be just a little bit more supporting and understanding of those who do suffer from these disabilities.
I have not been able to work since March 2007 having extensive pain in my knees, back and feet along with varying and intermittent degrees of pain in my neck, arms, legs, and hands. I was diagnosed recently with osteoarthritis of the spine and a flare up of my old nemesis, fibromyalgia, which originally afflicted me in 1984. I also have carpal tunnel syndrome in both of my hands, a damaged nerve in one of my fingers as the result of an accident, and am the unwilling "hostess" to migraine headaches, hypothyroidism, sleep apnea, GERD, irritable bowel syndrome and ADHD. I am awaiting the results of blood tests taken in July to determine if there is any systemic contributor (i.e. lupus) to the present increase in my pain. I am also waiting for appointments for an EMG for my feet, a CT scan for my spine and an MRI for my knees.
Pain is not new to me, as I have lived with it on a daily basis since before my formal diagnosis of fibro in 1985. At that time, it took about 4 years and many different approaches to treatment for the demon to finally settle down and allow me to lead a full and active life both personally and professionally. During those 4 years, I was unable to work not only because of the pain, but also due to the fatigue and depression, which hit me hard, mostly due to the inability to work.
I returned to work in 1989 and with the exception of two relatively short periods of approximately 4 months sick leave, (the first for post traumatic stress, the second for burn out) and the usual occasional sick days off work for the normal medical reasons, I have always held two jobs working anywhere from 5-7 days a week.
Today I find myself in a déjà vu situation of having to prove I am in pain extensive enough to prevent me from working. Moreover, perhaps because I am much older than when I was originally diagnosed with fibromyalgia, I find it extremely frustrating as well as demoralizing having to prove something that cannot be proven or quantified objectively or diagnosed by any known medical test or examination.
The conditions with which I have been diagnosed are all invisible disabilities. I am not deformed, I do not walk with a limp, my posture is not affected. The “worst” comment I have ever received is “you look tired”. I use no medical aids and I live independently, asking for help from no one as I can basically function on my own when respecting my own rhythm and limitations. I also take medications to help with the pain. I do not look sick and for the most part, I manage to keep a smile on my face and an outgoing and cheery disposition when out in public. And I emphasize “for the most part” and “when out in public”.
Presently I work for two government agencies and am “lucky” to have a wonderful benefits package that, among other things, supposedly protects me in the event that I become unable to work. I have, incidentally, paid for these benefits, the contribution a percentage of my salary that is deducted from each paycheque. Since March 2007, I have been collecting these benefits receiving 80% of my salary.
Since March, 2007 there has been no improvement in my condition and in fact, I feel that it has deteriorated despite medications and the obvious “rest” I am benefiting from in not having to report to work and living at my own pace without demands of schedules and outside obligations.
In June, as was expected, my first employer (I work on call with intellectually handicapped adults in various socio-professional settings) summoned me to be examined by their physician. The results of this examination and the comment of this physician (G.P.) were that I should be able to return to work at the beginning of July, as “4 months is usually the maximum allowed for fibromyalgia”. In addition, an “expertise” was requested from a rheumatologist, chosen and paid for by this employer. I saw this doctor early in the morning in July and he asked me many questions about my life style and medical history, and then examined me, putting me through many physical manipulations and manoeuvres (i.e. standing on my toes, bending to touch my toes etc.). It should be noted that he did not consult any previous diagnostic tests (i.e. x-rays) or my medical file with my rheumatologist. He did not test the pressure points used to diagnose fibromyalgia and he did not question me about the exact tasks of my job relying, I suppose, on a standard definition of the position “educator”, the profession I am employed in. His conclusion was that there was nothing in his examination which justified a prolongation of my sick leave, that I should stop my anti-inflammatories and take Tylenol for the pain, and that no further treatment was required. I was ordered to return to work on July 10th.
In July, the whole process repeated itself with my second employer (here, I work on call with adolescents, both young offenders and those in custody under youth protection. The settings range from groups homes in the community to a high security detention centre.). This doctor’s opinion on my case seemed to have been determined before I walked into his office. He did not examine me, told me that I needed treatments of “infiltration” for my knees (i.e. cortisone injections or other), told me that he would refer me to an orthopaedic specialist for an “expertise” and that this “expert” might or might not administer said treatments. He then ended our appointment. Again, this G.P. did not consult any previous diagnostic tests nor did he consult with my personal rheumatologist. In addition, he was extremely arrogant, did not ask many questions and did not even allow me to complete my answers to the few questions he did ask before cutting me off. I went to the appointment (once again early in the morning) with their “expert” who also was paid for by the employer. This doctor again put me through many manipulations, even measuring my thigh bones (purpose???). He did not examine the pressure points for fibromyalgia. He asked me many questions about my medical history and personal life. To repeat a now “old” story, he did not consult with my personal physician nor did he review any diagnostic testing which had been done. His conclusion was that I was in good condition and that there was no reason to prolong my sick leave. I was ordered to return to work on August 10th.
I did not return to either job, instead turning to my union to support me and “grieve” the decisions made by these “experts”. In both cases, an arbitrator will be named. If I loose my cases, I will be required to repay the insurance benefits I have received since the dates where I was ordered to return to work.
I do not have much hope of winning my cases nor do I have any encouragement from either of my union reps. The examinations of the “experts” are supposedly based on “objective” criteria and both “experts” say that my condition is such that I can function perfectly well at my jobs. Pain is disregarded.
How does one prove pain? Pain is abstract and totally subjective. This is one of the main reasons that fibromyalgia has such a mixed reaction from the medical community. There is no definitive test to prove that it exists. The “experts” who examined me both met with me early in the morning. They did not see me after working at my job where I am on my feet for the total eight hours, doing extensive walking, going up and down stairs innumerable times in a day, helping my intellectually disabled clients dress, eat, toilet, perform the usually manual tasks of their jobs, enabling them to move from location to location, pushing wheelchairs, transferring them from wheelchair to another area. They did not see me at the end of a day at home where the normal basic tasks of daily living (meal preparation, hygiene, housework, pet care, going for messages) leave me in pain and exhausted. I do not go out except out of necessity, I do not socialize, my life exists in my home, my activities, solitary. My sleep is disturbed and I never feel rested. They did not see this.
The pain is continual, relentless, and ever present. It exists in varying degrees depending on the time of day and the activity I am engaged in, the weather, the amount of rest I have gotten, the amount of stress I experience and on and on it goes. My feet hurt to the extent that I feel like my toes are broken, even though they are tingling or numb. When I walk, I feel like I am walking on the bare bones. Orthotics do not work. They, in fact, make the situation worse. My knees and ankles often feel like they will give out on me and often I stumble or loose my balance, much like someone who is intoxicated. My lower back is almost continually painful and the discomfort is not relieved whether I am sitting, standing or lying down. Then there is the pain in other areas of my body (such as my neck, hands, other), which is present but is not constant and is bearable.
I am not a lazy person. I have, in fact, been diagnosed with ADHD, with the emphasis on the hyperactive component of this condition. I have worked two jobs since the age of 17 and have always enjoyed and thrived on the busyness, the activity, the variety of tasks, meeting and relating to people (and this despite a diagnosis of major depressive disorder). I used to look on life as an adventure wondering what would happen today, whom would I meet, where would I be working. I used to have an active social life, dating, going to social and cultural events, dancing, truly enjoying life and relishing all that it had to offer. Not any more. I dread each day and its monotony. I do not enjoy waking up but am unable to sleep for any extensive period of time and when I do wake up, I am stiff, sore and groggy and certainly do not feel rested. The only “wonder” I have now is about which tasks I will be able to accomplish at home, when will I be able to return to a normal life, when will the pain become manageable.
After visiting with these so-called “experts” and discovering their conclusions, I now feel that my integrity has been attacked. I feel that I have been accused of lying and faking, that my pain does not exist. I normally do not like to complain or talk about the level of discomfort I live with each day. Now, I feel like I have to show it, analyse it, explain it, talk about it, prove it. And, how does one prove pain?
The worst thing of all is that the real issue here is money. It is about me depending on a salary insurance plan I have paid into which was supposed to protect my salary in the event that I became unable to work and it is about my employers trying to prove that I do not deserve it and that they should not have to pay it. My employers are not concerned with my quality of life or about my suffering. They do not really care about whether “Marilyn” works or not. They do not care if my job “hurts”. They are a business. They care about the money they are paying out for someone who is, regardless of the reason, sitting at home.
On my part, if I loose my cases with the arbitrators, which will most likely be the case, I will have no choice but to return to work. I cannot survive without a salary. I live alone. I have no one to support me but me. I know what will happen if or should I say “when” this occurs. Being on the “on call” list of both institutions, I have no individual sick days paid and so if I call in sick I will not be paid. If I refuse too many shifts because I am unable to work, I will be penalized and will not be called for a specific period of time and I will not be paid. If I do not respect my “availability” regardless of the reasons for not accepting any shifts, I could face a suspension and will not be paid.
If I do report to work and am unable to perform any of the tasks required because of my pain, not only will I put the safety and security of my clients at risk (in some locations I work alone with 8-12 intellectually handicapped adults), but I will also overburden my colleagues with the tasks I cannot perform and they will resent me, not want to work with me, possibly submit unfavourable reports to my superiors. Regardless of the possible punitive actions (suspension, dismissal) the employers may take due to poor performance on the job, the most important issue to me is that my reputation will be tarnished. I will be unwelcome at any site to which I report to work, I will appear to be incompetent. I love my jobs and am an excellent worker. My clients continually show me that they like when I work with them and so do my colleagues. If I return in my present condition, all this will be put in jeopardy and aside from the financial considerations, it is the damage to my reputation that is the biggest implication I fear.
Back to the issue at hand, how do you prove pain? How do I prove that I cannot possibly return to work without great suffering? How do I prove that I am not faking or lying and that the issues I deal with are real? The only glimmer of hope I have is that the tests I will undergo will prove something, anything. The x-rays that prove my osteoarthritis as well as the EMG that proves my carpal tunnel syndrome and nerve damage will be submitted to the arbitrators. Isn’t it pitiful that one’s only hope is the diagnosis of an additional disease or condition which is quantifiable, which will show up on some lab test, some graph, some piece of film? Isn’t it terribly sad, that my focus now has to shift to providing validity to my suffering instead of trying to find a treatment that will eliminate my pain or at least provide manageability so that I can return to a normal life? Isn’t it sad that when you are at your lowest, that when your suffering is all consuming, you have to search for the inner resources to fight a battle which probably cannot be won because you cannot prove something abstract, you cannot prove your pain. How do you prove the pain?
If you have any comments on my story, or if you have any suggestions or solutions regarding this topic, please click the "Advice from You" button on the left and leave your comments in my forum.
UPDATE OCTOBER 20TH, 2OO7
The date for my arbitration has been set for November 1st. I have, as yet, to receive anything from my rheumatologist to defend me and that scares me to no end. Seems like my word carries no weight in the "experts" opinions as to whether I am disabled or not. I have received the documentation that my union has sent to the arbitrator and they did a very unprofessional job, including sending the report from my company doctor who states that he can see nothing wrong. They also included letters I had written to my doctor asking him to defend me. The content was meant for his eyes only and was sent to my union only to show them what I had done to receive his report. The arbitrator does not need to see these letters and I do not know whether they will help or hinder my case.
I requested from my doctor a prescription to help deal with the anxiety I am dealing with as thoughts of the upcoming arbitration and my defense have totally consumed my every waking moment. The psychiatrist who treats me for ADHD prescribed an antidepressant as well as massotherapy to help me. And, she also suggested I contact the Pain Management Clinic to see if they can help me.
I still do not know how I am going to prove my pain to the arbitrator and am very pessimistic about the outcome of my visit with her. The only additional possible proof I have is that the results of the MRI's done on my knees are in and I will go to get them next week with high hopes that they will show something, anything.
On a positive note, in search for support with my ordeal, I did find a marvelous web site called The American Pain Foundation - Pain Aid . There I found a wonderful support group who are listening to me and helping me deal with all that is going on. The members are wonderful, offering encouragement and most importantly, validation. I have learned that I am not alone in my anxiety and fear. The treatment I have received from my employers and my doctor, are not exclusive to me, but seem to be standard practice. I feel that my journey right now is not a solitary one but one in which fellow pain sufferers have opened their arms and are willing to walk hand in hand with me in my battle. If you are suffering from pain of any kind I urge you to contact them as their site contains a wealth of information and support and most of all, their members truly live up to the name "angels of love and compassion". To them,and in particular, "dre","plumlady"(Deb),"momglenda","donnilip","wolfy"and "misswillieray", I send out my wholehearted gratitude and appreciation for all that they have done for me.