Lydia’s Story By: Lydia Neilson
FOREWORD
Dear Friends:
I have been involved with support since the 1970’s when I raised funds for the Canadian Heart Foundation by holding auctions. That was my first taste of getting involved with support and helping a cause. I found I really liked it but got too busy with family obligations and like everyone else who shares financial obligations with their significant other, there simply were not enough hours in the day to include helping others.
I was rudely awakened one day from my perfect life when I became ill and was unable to keep working. I will be writing about that later on so I am not going to bore you with any reminiscence at this point. Suffice it to say, I eventually recovered enough not to go back to work but remembering my passion for activism and support from the past, I felt I had to do something that I thought I could do at my own pace and with no set routine.
The experiences I have gained in trying to get help and a diagnosis for myself as well as the financial intracies that developed because of my inability to work, leads me to share what I have learned.. It really makes no difference what illness or disability you have, the road to a quality of life is a long and lonely one. This is even worse so if a diagnosis is not forthcoming because of lack of medical research on a specific illness.
Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) are two illness that at the time I became ill were known by very few medical doctors nor was it taught about in medical school. I sought to change that. This quest eventually led to me founding the National ME/FM Action Network
A few years ago, having communicated with many ill people and hearing their stories, I realized that many did not ever talk about their illness and how it affected their lives. I therefore asked for you to write your story down and send it to me and once approved by you, will be on the website of the National ME/FM Action Network. That project is presently in the works and is entitled Unheard Voices: My Story.
This is My Story.
Lydia
THE BEGINNING
It was a Friday, October 17, 1986 and although I did not know it at the time, the last day I worked for a living. I had just come back from my boss’ office and had given him my doctor’s note stating that I had to go on sick leave for an indefinite period of time. “Indefinite” was an understatement. How about an infinite period of time would have been more like it. I did not know what was wrong with me, nor did my doctor but she did acknowledge I was too ill to work.
I had noticed at work that by the time 12 noon would arrive, I was unable to go upstairs where I needed to go all day long as my boss’ office was upstairs. Trying to hide this was practically impossible as working in a busy law office, there were clients to bring upstairs, and varied other unforeseen happenings which invariably would lead me to have to go upstairs. This 20 step stairs had become as gargantuan as a mountain and not having a diagnosis made me think the worst.
It all stated In December 1985 as one of the law clerks had become ill which she at first ignored. However, after several days it became obvious she wasn’t getting any better so she decided to visit her doctor. Her bloodtests indicated she had extremely high titres of the with Epstein-Barr Virus. It took her a good six weeks to get over that before she could return to work. We were not particularly concerned about this as we were told by our physicians that we pretty well had all been exposed to EBV.
Except for that particular incident which resulted in all of us being ill in one stage or another, nothing else out of the ordinary was going on. Although the whole office had been ill, everyone pretty well recovered in about six weeks time. All that is, except me. Instead of recovering, I was starting to experience more and more symptoms I couldn’t ignore. However, I did manage to more or less continue working. Like many families, we needed both my husband’s and my salary to run our household.having two boys to raise. My youngest 9 at the time and my oldest 13.
What was the most frustrating, however, was not only the physical symptoms I was experiencing but also the mental deterioration I was starting to notice. Working in a law office you are very aware of dates being very important and therefore many steps are taken to make sure that no dates are missed. Both the client and the lawyer rely on your doing your part of your job. First I noticed I was starting to reverse numbers and so any date I wrote down I had to check, double check and triple check my information to make sure that this was not one of those occasions where my mind was playing tricks on me. If I was not having stress enough about that, I started to feel spaced out, almost like I was on something but no clear understanding about what was happening to me.
I was unable to multi-task, was distracted by any sounds around me and even crossing the street became a nightmare. I would look in one direction and then to the other, only to have forgotten whether or not it was safe to cross the street. What should take a few seconds became an albatross of events and it looked like I was watching a tennis match.
Foods that I would previously enjoy I was now unable to tolerate, nausea became a frequent companion. These symptoms I would relate to my doctor but there was nothing that stood out to give her some idea into which direction she should be looking. She had sent me to many specialists as well as special tests and all that did was make me feel like a hypochondriac and probably in the eyes of my physician also. Thankfully she never expressed that view.
Due to having problems tolerating most foods, I lost over 20 lbs which I could ill afford to lose. Some of my friends stated that they wished they were in my position to have a chance to lose that kind of weight. Even they were perplexed by my frequently having to cancel plans to go out with them and it became their habit to actually call me on the day of the outing to make sure I was coming. Later on I had to adopt that approach as until the day arrived, I had no way of knowing what kind of shape I would be in on that particular day.
This all came to a head on October 17th, 1986 when I had no choice but take my doctor’s advice and take a leave of absence. By this time I had trouble getting out of bed in the morning, if I could get out of bed at all. No matter how long I slept and no matter how many breaks I took, I was unable to get any relief from the constant exhaustion I was feeling. I am basically a morning person and do my best work at that time. I absolutely dreaded mornings and the constant struggle I faced in talking myself into getting out of bed.
I was not prepared for any of these events. I was never ill except for the occasional cold. Like any healthy person, your health is the last thing on your mind. I must confess I took it for granted. I don’t think any of us think about what we would do if we got seriously ill. You can plan an escape plan in case of a fire, but whoever makes an escape plan in case of illness?
As my doctor felt I was just needing a break, the indefinite time off work meant I would be going on sick leave under employment disability which was good for 15 weeks, money at this point was not a problem and so taking time off work gave me some relief from stress. Not for one moment did I think I would need the 15 weeks of sick leave.
NOW WHAT!
It seems that every time I turn around another symptom appears. This has become so embarrassing. This reminds me of a story I had read in Highschool where this hypochondriac was looking up symptoms in a medical dictionary and realized the only disease he didn’t have was housemaid knees. I do not recall the book nor the author but in an effort to find out what was wrong with me I looked up many diseases simply because of some of its symptoms. I felt that my biggest problem was not the illness itself but the fact that no one knew what it was. I figured once that was known I would be well on the way to recovery. I think back of that time now and I can’t believe how naive I was.
I thought I was getting smart by keeping a list of the symptoms that seemed to be coming and going. The list became depressing, and no end in sight. I went from seeing my GP once a year for an annual check-up to sometimes so often that she probably didn’t need any other patient to pay her office expenses. None of these visits brought any results. All I know is that every new medical expert she sent me to, all of them were of the opinion was that I was depressed. I started accumulating tons of sample anti-depressants and prescriptions. Depressed? Yes, I was depressed because I was ill – not ill because I was depressed.
In addition to being ill, my first dilemma was to fill out an application for disability benefits. Easier said than done. Try to get benefits when the doctor is not able to give you a diagnosis. Eventually the doctor called it Epstein Barr Virus. Although it took some doing but eventually I did get my 15 weeks of benefits. As the law firm I worked for did not have insurance covering its workers, that is all the benefits I got. Once I left work, except for the usual vacation pay, no other salary was forth-coming. What I did get was lots of phone calls wondering when I would be back at work. The law firm had hired a temp and as the temp earned more than I did, they obviously wanted to put that at an end as quickly as possible. This added extra stress to what already was a stressful situation for me as well as my family.
On my visit to my doctor’s office as the 15 weeks unemployment disability was coming to an end, and because of my frequent enquiries from my employer, I asked my doctor for an approximate date when she thought I may be ready to return to work. She told me that in her experience with EBV patients, most were able to return to work within a short time. However, I was not responding the same way and she didn’t see any improvements in me. My husband and I decided at this point that to at least relief the stress of my employer’s request for answers, I should resign from my position so that they could hire a replacement and they would leave me alone.
I thought I would feel a sense of relief but instead it resulted in me feeling lost and useless. Not only was I unable to really take proper care of my family but now I could not even contribute to their financial wellbeing. Everything was now shoved onto my husband’s shoulders alone and all I was doing is what – exist?
I started to name the illness Now What! as each time I thought I knew all its symptoms, a new one would crop up and I would say Now What!
THE GOOD NEWS AND THE BAD.
My daily routine consists of getting out of bed and moving to the sofa in the livingroom. This effort leaves me totally exhausted, even though I have spent the whole night in bed. I cannot believe that anyone can sleep so much and still not feel rested. How is that possible? I cannot watch TV or even listen to the radio. My whole life consists of pillows and blankets. I can’t remember the last time I looked in the mirror. Sometimes I comb my hair, sometimes I wash myself but any kind of even daily personal hygiene is so exhausting that even just thinking about it puts me into a panic.
What gives me encouragement is that I am noticing slight improvement and by February 1988 I am going for a follow-up appointment advising my doctor that I finally was starting to to see improvement from EBV. My husband dropped me off at the door what I thought was my doctor’s office and as it usually takes some time, he had gone on some errands. Once I got in the building, I realized that I had written the number down wrong and after checking the number realized I had to walk about six blocks to the proper location.
It was extremely cold that day and by the time I was at the doctor’s office I was completely out of breath. It is this episode, in my opinion, that not only erased any progress I had made but it also brought me into a completely different phase of what I thought was EBV. It is the second onslaught of something that took me out of the chance of recovery to what I know now as ME/CFS.
For the next two years, my daily routine was back to the beginning of bed and sofa and sofa and bed. It is difficult to remember one day from the next at the point. The only constant was I saw my GP on a regular basis, at which time I would get to leave the house. The only thing that stands out from that period of time is that in addition to the symptoms I had gotten from the start, I developed panic attacks that I was so afraid of that I always wanted to be within 30 minutes of a hospital. The first time I had an attack I ended up in the emergency department as I thought I was going to die as I had trouble breathing. Little did I know that it was my panic that stopped me from breathing normally. Later on I learned how to deal with them but at this time I struggled with them and would panic until the attack was over.
On one particular appointment to my GP and my incessant complaint about being exhausted, she told me that she had just received a letter from a Dr. Byron Hyde who, on a recent flight out of the country had met a British doctor who told him about an illness named Myalgic Encephalomyelitis which they originally named in 1953 when doctors at the Royal Free Hospital in England and nurses all came down with an illness they did not recover from. In describing the symptoms, Dr. Hyde felt that the people who were coming into his office were displaying similar characteristics. He decided to research it further and was writing doctors in Ottawa alerting them to this illness. He asked if they had any patients displaying these symptoms to send them to him for further studies.
As my GP did not know what else to do asked if I wanted to see Dr. Hyde and see if this could be what I had come down with instead of EBV. At this point I figured that I had nothing to lose and got an appointment with Dr. Hyde. This appointment changed my life forever. Dr. Hyde asked questions that nobody else had asked and I was believed for the first time that what I was experiencing was real. That in itself did a lot for my self-esteem. What was interesting was that he looked at the bloodtests that I was told were normal and he told me that although they were in the normal range, they were either borderline high or borderline low. In other words, almost abnormal. All this was news to me. I knew nothing of bloodtests or anything remotely medical at this stage. That eventually would change, first out of necessity and then to help others.
A few weeks later, Dr. Hyde held a meeting in Ottawa where there were hundreds in attendance who were in a similar state of illness as I was. What I thought was only me turned out to be nothing of the sort. Person after person stood up relating similar horror stories as my own. Although of course I felt bad they were ill, at the same time it was a relief to know I was not alone. Many of the people I met on that day I still am acquainted with today.
NO LONGER ALONE BUT……
I thought I had made progress by getting a diagnosis. I imagine doctors apologizing to me for not believing me and the thought of this brought a smile to my face. I was brought back to reality when I heard a doctor calling my name over and over again as I was imagining this different scenario. The doctor was talking about listening to my body and taking time to rest, making sure I had enough sleep blah blah blah blah blah. He was talking as if I had any choice in the matter. I had done nothing but sleep, and my body and mind decided when I would be up and about when I would be down. Listen to my Body? I had done nothing but listening to it. If that was the only thing I needed to get cured, I should by now be running in the Olympics.
Now that I had a diagnosis of ME/CFS and having met others at the meeting, I started to feel a different sensation. One of anger. I was angry that this illness had been around for a long time and had been known by many names but no one sought to get to the bottom of it. We were treated as invisible patients with invisible illnesses and I decided at that point to put out signs on bulletin boards in stores and libraries announcing that anyone with certain undiagnosed symptoms might want to come to my meeting to see whether or not ME/CFS should be considered as a possible diagnosis for them.
I think what became the biggest setback for all of us who were either just diagnosed with EBV and eventually Myalgic Encephalomyelitis was the U.S.A.’s 1988 Holmes etal definition entitled The 1988 Holmes Definition For CFS.: Chronic Fatigue Syndrome: A Working Case Definition AnnInternMed.1988:108:387-389. We now not only had to deal with yet another label but it belittled the exhaustion experienced by us along with other symptoms.
From what I was able to determine in interviews Dr. Holmes had done, he noticed that what the patients all had in common was the feeling of constantly being tired. After all the media comments based on doctors’ interviews established that this was an illness related more to a psychiatric condition rather than a medical one, it trivialized the tiredness of the individuals and made us objects of ridicule. A doctor whose name I cannot recall stated aptly calling ME chronic fatigue is calling pneumonia a chronic cough.
There is of course the extra difficulty of having this name of chronic fatigue used by the media and family and friends who supported us. They started telling us what they had heard and now viewed us as people who did not want to work. They would tell us that they probably also had CF as they were tired. We started to turn more into ourselves and saying less and less about our illness in order to avoid being dismissed as malingerers.
If that was not bad enough, this same attitude by the public was also felt when sent for doctors and specialists’ appointments. More anti-depressants were described,and strange questions were asked:
• are you happy in your job or marriage?
• were you sexually abused as a child?
• are you depressed?
In the end, I got so frustrated that I told the doctor that I was depressed because I was ill – not ill because I was depressed. However, if I would relate a new symptom, the doctor would say it was part of my illness. You mean the illness I’m imagining?
GIVE ME A BREAK!
I am sick and tired of being told I am depressed and that the symptoms I am experiencing will go away, once I take the anti-depressant. Having met people who are severely depressed, it is a disservice to those who really are and their depression should not be belittled in any way. I am no doctor and am only talking like a person who had a full life, loved her life and had a great job. I come down with an illness and as it progresses it turns from an illness into a depression? All I have to do is think positively and the symptoms will go way? Give me a break! I can say that now but at the time it was happening I was not positive about anything anymore. I didn’t know what and whom to believe. Common sense tells you that if enough doctors give you the same diagnosis, then it must be so. That may be true when backed up by science, research and proper tests but when it is not, then on what are you basing your diagnosis? From what I have observed over the years, my opinion is that medical professionals have come to rely on tests so much that they do not look at the obvious. The patient in front of them. A ME/CFS and FM person does not look normal nor even walk normal. True it is not obvious to the average man on the street but surely a professional who sees illness every day should be able to see what is so obvious to those who take the take to observe the person. I bet most, if not all of us, if given the chance to say what they thought, would say what I am saying. It was always the same routine. Saw the specialist who is sympathetic, listens and orders tests. You go back for the follow-up appointment and the whole attitude of the doctor has changed. The doctor tells you that everything was normal. Then the spiel of what is going on in your life that makes you so depressed you’re ill. This pattern never changed, just the doctor’s name. When people become ill then they want to know what is wrong and of course want to get treatment. When none of that is forthcoming, you get upset and be sad but if the pattern were to change and treatment and support were given, no anti-depressant is necessary in that case. These are life events you will overcome. Sadness doesn’t make your ill. Depression, on the other hand may be similar to sadness but on a much larger scale and more profound. It is not a normal emotion like sadness is. Depression is an out of control emotion and is not a normal reaction to human difficulties. There are tests that comfirm that diagnosis but interestingly although I was told many times I was suffering from depression, no tests to confirm that diagnosis was never done. At that time I didn’t know any better. I know if just one of those medical professionals would have taken the trouble to really listen to me and I felt at least some empathy from one of them, then at least I would walk away from that appointment uplifted. Unfortunately at that time that never happened when I needed it most. The only good thing that came out of that was that I learned what it must be like to be ill and not be believed. It has helped me a lot over the years with others.
A TIME TO GRIEVE
I had a hard time dealing with the different emotions I was experiencing that did not make sense to me. In addition, the reaction of my family and friends also left me baffled. A friend dropped in to see me who was telling me how she was having a hard time dealing with her grief after she lost her husband. She started to tell me about a book someone gave to her which dealt with grieving and the different emotions that a person goes though. The book was authored by Elizabeth Kubler-Ross On Death and Dying.
As I am an avid reader, I had read the book and how a person who was terminally ill went through different stages of emotions before finally accepting that death was imminent. I took the book out to reacquaint myself with its information in order to help my friend. I then came to realize that not only could it help my friend but that any loss in one’s life would need to be grieved in order to move on. Now it was as if a lightbulb went off and I realized there is a light at the end of the tunnel. I was simply grieving which I needed to do so that I could move on.
I now understood that as she was grieving for the loss of her husband, I was grieving for the loss of the life I used to have and the loss of me as I used to be. I now also understood that my family and friends were also experiencing these same grieving stages. I did not realize that as they told me how they had trouble dealing with the new me as they did not know me. They had to reacquaint themselves with this new personality whom they knew nothing about.
As time went on, I started realizing everyone was coming to grips with their feelings of loss at their own speed and we collided simply because I was going through one stage while they may be going through another stage. If I’m dealing with anger and they’re going through denial, it is no wonder we cannot connect. This helped me to understand not to take what my family and friends were displaying as personally as I was. This helped me tremendously because if you take away the personal from the situation, you can then look objectively at what they are actually expressing. With time I came to recognize and be able to understand their feelings.
I know that before you can close a chapter of your life, you have to deal with whatever is stopping you from closing that chapter. You cannot move on if you’re continuously looking back. Some people call it closure but I just simply call it moving on and coming into the present. I was not at this point of time in a position or will to want to re-establish a life but I did want to understand what I was going through. Grieving is for mourning of a loss. Now that I understood I was grieving, I turned to experts who have written on this very subject.
One of the first things I learned was that even though there are stages of grieving, the length of time you may take for each stage of grieving is solely dependant on you. There is no set period, just as the grieving stages for someone who lost a loved one is different for each one of us. Slowly but surely I now started to understand how grieving affects how you act or react or think about anything. When I think about it now, I find it very appropriate to grieve before you go on to the next episode in your life. I know the author, Elizabeth Kubler-Ross had made that observation and her book helped me in so many ways, with both my husband’s illness and death.
In August 2008 my husband passed away from cancer. It had been a devastating battle and during those two years that he suffered, I slowly saw the man I knew turn into a skeleton of himself. When he passed away, and I went through the grieving stages, I was mourning but having already dealt with grief before, I understood why letting myself grieve was so important. It is a natural emotion in response to a loss and it is just as important to deal with that as it is to deal with any other trigger appearing in your life. Now, more than any other time,
My husband’s passing was very traumatic but I think that going into shock and denial is a good thing. If everything were to have hit me all at once, I doubt my mind would have been able to grasp it. Below are the stages of grieving I experienced.
• DENIAL
When I first was told that I would need to take an indefinite leave of absence when it was determined that I wasn’t recovering, the shock and disbelief I experienced left me numb. This couldn’t possibly be happening to me. The doctors had to be wrong. The feelings I was experiencing were overwhelming and I was so shocked that I refused to even consider this could be happening to me. I don’t know why I thought I would be exempted from becoming ill, I have no idea but if you have always been healthy and hardly even had a simple cold, I considered if I was ill to be a weakness.
When I was growing up, my parents used to brag that they went to work even when they were ill and boasted never having taken off a day for sickness. Here I was, not only taking off a day but who knows how long I would be off. Having no specific diagnosis or treatment didn’t exactly help my credibility with everyone either. How often did I hear “….but you look so well”. If I were to look how I felt, I think a scarecrow would look better. At that point I resolved never to tell anyone else when I was told he or she wasn’t feeling well, I would never tell that person that they looked good or bad for that matter. Either way, I is very unhelpful to deny that person’s feelings. I know I felt I had no right to feel ill as I didn’t look the part.
• ANGER
When I worked through the denial stage and started facing the reality that I was indeed ill, I found myself getting angry at the unfairness of it all. I felt I did not do anything that was so bad that I deserved to be punished. I was angry at God for not doing something for me and why did He let this happen to me.,
I was angry at my co-worker for being ill and coming to work and making me ill. I was angry at the doctors for not recognizing I was ill and then for not fixing me. I pretty well had an excuse to be angry at just about anything and anyone.
I was angry at my husband and friends who I felt didn’t realize how ill I was. This was grossly unfair on my behalf as it was my family and friends who sustained me throughout this phase of my illness. To say I was unappreciative, would be an under-statement. I was so miserable and angry that it was a good thing I didn’t have control over the universe because there would be no way of knowing what kind of turmoil I would have created.
I envied my co-workers who would call me to see how I was doing. They would then tell me what was going on at work and it angered me that everyone was doing just fine without me. The place wasn’t falling apart and court was not postponed because I personally didn’t prepare the documents. Others did. If I ever thought the place couldn’t do without me, I sure didn’t doubt it now. My self-esteem sure wasn’t going up a notch.
This was a very difficult phase, not only for me, but for everyone who dealt with me. My co-workers stopped calling as it became obvious I didn’t really want to talk about work and they didn’t want to talk or hear about what I was going through. Soon enough I realized that now that I wasn’t at work, my co-workers and I didn’t have anything in common anymore. We had never socialized except when the firm organized a get together. Otherwise, everyone just wanted to be away from work and they certainly didn’t want to talk about work on their off-time.
My family was walking on tiptoes and were confused as to how to deal with this person I had become. Friends who I socialized with started making excuses not to come over as anytime they invited me to go with them, they were confronted with an assault of reasons why I couldn’t. If I did agree to go out, it was always cancelled upon arrival of the date. I became completely unreliable for anything.
I am usually an easy-going person by nature and now I was even angry at myself for not dealing with this new twist in my life. I had always prided myself on being able to handle any situation and thrived on stresses and challenges. Now any change to my routine and I would be overwhelmed and uncertain as to what to do. My sense of humour had disappeared and once down wouldn’t get up.
• BARGAINING
As sudden as my anger came, there was no warning when the anger left. Although I always believed in God, I prayed at the times that I thought were appropriate. I now found myself requesting His help as I felt mankind had deserted me. I felt guilty for not praying for no other reason than to ask for help and resolved never to do that again if only He would listen to my request for help. I had never prayed just for myself but now remembered that I had made the same kind of request of God when my oldest son was only six years old facing open-heart surgery with only a small chance of survival. I felt that He had granted my request for my son but I had not kept my word and He was punishing me for it. I promised that this time I would never forget.
• DEPRESSION
I found depression very difficult to deal with. At least in the other stages I was still willing to try things. Now I didn’t see the point of it all and even convincing myself to get out of bed was difficult. Why get up – I’ll only go and lie down somewhere else. Why get dressed – I’m not going anywhere and it is too tiring to change. It’s easier just to stay the way I am.
I found myself shunning visitors and even pretending I wasn’t home just so I didn’t have to explain anything. I didn’t answer the phone as I didn’t want to talk to anyone. All of it just seemed pointless. If ever in my life I understood end of life, it was probably now as I now believed it possible that I may die. As strange as it seems, as a rule I never gave end of life much thought even though of course we all know sooner or later we will die. I never dwelled on it nor felt threatened by it. Now I was very much aware of what dying would mean. In a sense I already felt dead. Just my heart didn’t realize it.
The only relief I got was crying. When I would cry, there was a little bit of respite before all the isolation started gripping me again. The solution would be company but I didn’t want to see or talk to anyone. It was as if all my feelings had turned off. I felt nothing.
• ACCEPTANCE
I think the depression was probably the hardest on my family as they couldn’t reach me and didn’t know what to do. I completely lost track of time and have no idea how long I went through that stage. Then one day I found I was fed up and felt if this was it, I might as well make the most of it. I knew I was not able to go back to the way I used to be. Somehow I didn’t look at things the same way anymore. It’s like I had lost my innocence.
I had not realized that I had not been taking care of even personal hygiene. I don’t recall even washing my face or hair. Hopefully I did sometimes but I know it was not on a regular basis. I have at least one shower a day but during that period I didn’t like to shower as it tired me out too much. When I did take one, it was followed by a long rest.
Reality was coming in and although I believed I would be able to go back to work some day, I was resigned to it not being soon. That much I was able to accept and I resolved to somehow get myself out of the rut I was in and I started to cut the day into baby steps.
NO TEST – NO ILLNESS
Acceptance of my illness was not easy. At first I felt by accepting, I was giving up but eventually the Dutch stubbornness in me thankfully took over. I started hounding my doctor requesting to be sent to all kinds of specialists as I didn’t believe that if they did the proper test, they would find what was wrong. Although I may have accepted my illness, I had not accepted that a test wouldn’t indicate it.
I thought all my troubles were now over. Fat chance of that! I didn’t know they were just beginning. Although I had a diagnosis, except for my GP, no one believed me. The names of the doctors were different, but the results were always the same. The protocol would go like this: At first sympathy, followed by utter disbelief and a convincing that my illness was nothing that a good anti-depressant couldn’t fix, then followed by a quick .guiding out of their offices.
One doctor who stood out though was one I had been sent to by employment insurance. This doctor was working at a very well known teaching hospital but also saw patients sent by their insurance companies for verification that they were ill. He did believe I was ill and that my symptoms were real. He even went so far as to tell me that he had seen others with the same illness. However, he explained that although he understood my illness, he had a nice little practice and couldn’t afford to have patients who would take up valuable time that he was unable to do anything about. The staff had also been told by the hospital not to talk about CFS. This was not the first time I had been told that. A nurse who befriended me at another hospital told me the same thing.
I had never had that much experience with doctors as I never needed any. I had this belief that as their mission and motto stated they ‘would do no harm’. If only doctors thought about how what they say will hurt. You expect to walk out better than when you walked in. A sympathetic word goes a long way when your life has been pushed upside down.
I found that the bottom line simply was that if it doesn’t show up on a test, then it simply doesn’t exist. No longer listening to a patient and observing their demeanor plays a role in many doctors’ lives. In many cases it has become like a referral service for tests and then you’re told you are perfectly fine, the tests are normal. As the tests you are sent for are specific, of course they would come back normal if you haven’t got what the test is supposed to determine. The failure of the test is that it cannot determine what it isn’t asked. That doesn’t make you healthy, just you haven’t got whatever. How about if you haven’t designed a test yet that would determine the illness? How about research?
Right now only the symptoms are treated. With me it was a question of choosing which symptoms I wanted treated more than any other. Then there would be the side effects. Sometimes they were worse than the symptoms the drug was covering. Drowsiness? Check. Nausea? Check. Fatigue? Check. And the list goes on. Why would I want to take a drug that would amplify the symptoms I already had?
There came a point all tests that could possibly be made, had been made. Alternative or homeopathy did not help me either. One doctor I saw was so convinced that she could cure me put me on a cereal and grains regimen. I lasted three weeks on that and became so sick I ended up in the hospital once again. Diagnosis – malnutrition. That particular episode set me back months.
It finally registered that there was nowhere else to go or things to try. Once again, anger took over but with that came resolve but that’s another story.
FROM ANGER TO ACTION
It soon became obvious that I would be better off not saying anything about ME/CFS as what appeared to be a sympathetic doctor would turn nasty and incredulous. They all admitted hearing about CFS, not ME, but they said it was an illness caused by stress rather than a physical illness. More anti-depressant added to my collection. That and tranquillizers. I could start a pharmacy. I would go to the follow-up appointment with optimism and hoping that this time there was something they could fix. I could not believe I felt so ill and still the tests come back normal. The doctor would look at me with an I- told-you-so expression and would then start talking about depression and anti-depressants.
As I was becoming more and more disillusioned with the medical establishment not being able to help me and hearing others voicing the same pessimism, I couldn’t understand why no one was doing anything to find a solution. I even called the medical associations asking why no research was being done on ME/CFS and FM. I was still at the stage where I naively believed that researchers researched illnesses that needed to find the cause of the illness and once established treatment and a cure would be studied. Unfortunately, research needs funding and without funding there is no research.
More and more the healthy friends I used to know started disappearing and my only contacts were those with similar illnesses. By that time I had met both people with ME/CFS and FM and realized they too were in the same position of not being understood and believed as those with ME/CFS. The only thing is FM sounds better than Chronic Fatigue Syndrome but that didn’t seem to make a difference in that case.
When my husband and I were talking as he would drive me to the meetings I started for both ME/CFS and FM locally, he got to hear others that sounded just like me. Any doubts he had about my illness completely disappeared and from that moment on he became my staunchest supporter and helped me with everything I undertook to bring ME/CFS and FM into the open. I went from Somebody Needs To Do Something to I Am Going To Do Something. Although I didn’t know it yet how I was going to do it and what but I no longer was willing to sit on the sidelines and let our people go it alone. An idea was forming but did I have the strength and perseverance to do it?
It became very obvious that if we wanted support, it would come from the ME/CFS and FM community. At first I started volunteering when I could at national organizations in Ottawa that were already established. However, although they were helpful, what I and others were experiencing was not being taken care of yet. We needed to find sympathetic doctors who were willing to help us as well as people in other professions to help with disability issues. We needed to get proper information on ME/CFS and FM and alert people about these illnesses and so much more. There was only one thing to do to make this happen and the National ME/FM Action Network was founded.
