-6- THE ELATION AND VALIDATION OF DIAGNOSIS VINDICATION AND RELEASE When I did call the support group, early in 1991, I met a wonderful lady named Pat. Pat did more than listen to my story, she encouraged me and validated me along the way. She lent me her research files on the topic, which she allowed me to copy for my own files. I then took and made copies of materials I had from other sources to add to hers. She seemed to be the first person to really and truly understand what I was going through. Pat told me of a group member in the nearby community of Sooke who had problems quite similar to mine... fibrositis and then some. Helen had also been originally diagnosed to be suffering from fibromyalgia, but in addition she also had Myalgic Encephalomyelitis (M.E.), also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). Pat gave me Helen's phone number, and as I sat in Pat's living-room she called Helen.. gave her my number.. and handed the phone over to me. Pat was pushy... and Pat was right. I had read a little about M.E.(CFIDS) in the material from Pat's files. I had not known M.E. existed, I had only a vague reference to a fatigue syndrome from an episode of the TV show "Evening" one night on KING-TV from Seattle. When I asked Dr. R about it he told me that it was a nasty disorder and that it was one I did not want to have, so to put it out of my mind entirely. He was right that I did not want to have this M.E. It was not curable. It was nasty. But it sounded frightenly familiar. I kept on putting off calling Helen for a real heart-to-heart because I was scared of the idea that I might have M.E.(CFIDS). It seemed to me to be a life sentence of the very living death that I most feared . I did not push the idea to Dr. R, as he had already told me not to bring it up. As if I could choose the disease of the week to claim as my own. So much for getting any help out of that man. Pat encouraged me to get another opinion. I had tried this route before, with no success... but I had no idea of what should be looked for at those times either. Tired of waiting for me to call, Helen phoned me. After an hour on the phone quizzing me on my symptoms, she told me to find myself a doctor who treated M.E. (CFIDS) so that he could definetly rule it out. When I told Dr. Wingert about the possibility of M.E. (CFIDS), he agreed with Pat and Helen. I was not yet convinced that I should try the doctor and test route again. With fibromyalgia, I had found a niche I could finally settle upon and cope with. I did not want to have this M.E. thing confirmed. It was much too hopeless for my liking. But I was also being urged ever more strongly to get it checked out. Helen put me in contact with the local Victoria, M.E.(CFIDS) support group and, Marie, one of the groups leaders listened to my story with compassion and validation. She said that the group did not endorse any particular doctors but there were a few to stay away from. When I expressed my need was simply to confirm or deny what by that point had become the obvious, she said it was smart to work with a doctor who truly knew what to look for. After consulting with a few of the other support group members, Marie gave me the names of a few doctors to call. Unfortunatly, I found that with these people I would have to wait several months for an appointment, if I could get one at all. In dispairation I called Helen and pleaded for the name of her doctor. At first she was very cautious about giving me his name, lest the experience prove to be an unsatisfactory one. I emphasized the point that I needed someone in the know to to confirm or deny the disease, nothing more or less. My tears caused Helen to give in and give me the name and number of her doctor. When I called his office I was amazed that I could get into see Dr. Walovitz later on that same week. It was no further from my home in Langford to his office in Sooke than it was going into downtown Victoria, and a far more pleasant drive at that. But still, I did not look forward to the visit. My mind tends to go blank at the most inopportune times, a fact that I find most annoying. To prepare for the visit I took time to write up my health-care history. With the aid of my computer, I was able to compensate for a spotty memory and unreadable hand-scrawling. I worked in a stop and go manner and when done printed out the result. I spent three days working on these few pages. I tried to be as systematic, inclusive and academic as I could. Only then did I finally see a pattern emerging over time. This both excited and frightened me. I prayed that Dr. Walovitz would not think that my efforts were a confirmation of my "psychosis". I could not trust my ability to explain verbally to him what was wrong, so I wrote down all I could and hoped it would not be in vain. My efforts came in handy. Dr. Walovitz was amazing. His gentle, soft spoken manner and the fact that he really listened were quite different than what I had been used to, or expected. When he asked me what exactly it was that I expected from him, I told him quite bluntly... confirm or deny that I was suffering from M.E. (CFIDS). I knew that there was more to my illness than just Fibromyalgia (FM) from the research I had recently done. I wanted to find out what "it" was. I felt great relief when instead of talking down to me, Dr. Walovitz actually accepted my "challenge". He ordered up a series of tests and told me to come back in a week. Well now, that experience was unusual enough in and of itself. I did not expect anything amazing would be found by these tests since nothing had ever been found before. This time I would be tested for yeast and HIV as well, for which I had never been tested before. When it was time for the return visit I prepared myself for the worst, to once again be brushed aside as being just another hypochondriac. But that did not occur. The test results were just as I had expected them to be, nicely negative. No surprise. The surprise was in Dr. Walovitz's reaction to the results. He smiled at me, saying that he could rule out all of the usual things that would cause my problems, and that this was a positive start. Everything pointed to M.E. (CFIDS), so he was sending me off to an internist for a second opinion. This particular internist not only believed in the mysterious M.E. (CFIDS), but was willing to diagnose it. ---- DIARY. THURSDAY. It has been another long and sluggish day. Welfare is an ass. I must file for medical Unemployment Insurance and the boss has yet to give me a separation slip or anything else. And I need Dr. Walovitz to fill out a form as well. What a mess. I haven't the strength to frick around with all this nonsence. I saw Dr. Walovitz today and even though I was coming down with one hell of a cold the tests were all normal. He did more research into M.E. and still figures it's what I've got and he is sending me off to an internist that specializes in M.E. - Dr. Broome. I also got a note for welfare, as requested, and a prescription for Prozac which welfare will pay for. Hell, if I had more energy I'd just go out and get a job and tell welfare to fuck off - but I don't. Always the hard way for me, never the easy one. Anyhow, after Dr. Broome confirms the M.E., I'll likely see a urologist about my bladder. Dr. Walovitz suspects Intersistal Cystitis which goes with M.E. I pulled out a library book on the subject... another incurable disease with lots of pain to look forward to. Dr. Walovitz says that Endomertriosis is also common in women with M.E., which was the reason for my hysterectomy. Really a nice thing this M.E. Don't worry, take it slow, all will come together. I will concentrate on my writing soon. All will be OK. Everything will be fine and dandy for everyone. Just relax, don't push it. Research and relax. Miracles happen slowly some times. Be careful what you ask for as you might just get it and find that it is not quite what you wanted it to be. I am apprehensive about seeing Dr.Broome. If he denies the M.E., he will find something he can cure. I cannot be worse off than I am now with at least two incurable diseases ( three with psoriasis) that wrack my body daily. I've already lost my uterus. Will I get a fancy name for a bowel disease to make that list total four, or shall we count the secondary fibromyalgia that results from the M.E. as the fifth?? Not to forget flat feet and bad breath. If it wasn't so tragic it would be comic. And there are still people out there who expect me to get a job. My dry humor needs to be exercised lest I go mad. ---- Dr. Broom's office was easy to find, being across the hall from my gynacologist. I did not get lost like I did when I first tried to find the gyn's office. He had copies of my test results, and a copy of the medical history I had done for Dr. Walovitz. He questioned, poked, examined, and asked more questions. He ordered up more blood tests and told me to return in three weeks. When I did return he confirmed the M.E.(CFIDS) diagnosis, but his advise sounded like the old broken record I was able to recite in my sleep. I nodded politely and made an appointment for six months later that I did not intend on keeping unless I was desperate. I left his office quite confused. His advice was right for FM but wrong for M.E.(CFIDS) according to my research. Had he confused the two? He said that he would be sending a report off to Dr. Walovitz so I would wait for an interpretation of the findings before I would react to them. When Dr. Walovitz confirmed the M.E.(CFIDS) diagnosis it was a good news/ bad news format. The good news... the mystery is solved. The bad news... it is incurable and there isn't much that can be done. The good news... research progresses and the disease is not fatal. My head felt light and my heart soared. At last... confirmation of something. I was not crazy, nor a hypochondriac. All the correlations had matched up to the symptoms of a known syndrome. I had a name, an enemy I could fight. I was validated in my suffering. I was no longer alone. I was no longer just a nuisance. I had been right all along. My body was ill. I felt so very good and light. The burden of doubt and guilt had been lifted and I felt that now I could get a handle on my life. Now I could know what to expect. Now I could follow the bouncing ball through flowcharts of cause and effect. Now I could cope. I had a name for my demon and in that knowing is power. This time I am much slower than ever before in getting well. Will I get well again? There is no answer to my question. ---- "THE NAME" I have a name. My disorder revealed, My name vindicated, Answers as to why I feel this way. I have a name. False diagnosis is brushed away, My pain is validated, I am validated once more. I have a name. Words to explain a set of problems, A grouping of symptoms, A recognized syndrome of physical cause. I have a name. The doctors had stopped looking, They gave an easy name and ignored the rest, They blamed the victim for her ills. I have a name. It is beautiful and terrible, It is a life sentence but not without hope. I may have caught on soon enough. I have a name. I am released from guilt and shame, For I did try hard enough and work hard enough, But working hard was the wrong game. I have a name. My relief frees my burdened heart, While my body is heavy my spirit soars, For a brief moment I can fly. I have a name. Now it all makes sense to me, So much to learn and to accept, It is a different life I can lead. I have a name. I now can heed my body's call, I must heed my body's call, I am not lazy or unwilling for I am ill. I have a name. Myalgic Encephalomyelitis. The true battle can now begin, And by knowing the name, The battle is half won. P. Griffiths, 1991. * This poem has been twice appeared in the Victoria, B.C. support group newsletter. -----