Prior to my illness, I never had a regular doctor. I felt no need for one. My experiences with my small-town doctor growing up had convinced me that doctors cared. Doctors listened. Doctors would help when needed.
When I was hit with the very difficult neuroimmune illness, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), I was terrified. The symptoms knocked me into outer space; they were unlike anything I had experienced before.
The first doctor told me nothing was wrong with me. He became irritated when I contacted him a month later, still barely able to wobble down the hall, eat, think clearly, or tolerate sound or light.
I got myself to an ENT specialist, but when my inner ear testing was normal, he proclaimed (in a busy hallway!) that I had a “neurotic depression.” I told him I had been a clinical psychologist, and what I had was NOT a depression. He gave me a sage look and said, “We don’t always recognize it in ourselves.”
A trip to a neurologist was even worse. He ridiculed me and said nothing was wrong. Ironically , my chiropractor, who had a couple of other patients with the same problem, recognized it as chronic fatigue syndrome, the demeaning name it was known as exclusively then.
I bounced around to a couple of other doctors who did believe the illness was real, but rarely saw me and, when they did, took no time to listen. Nine years later, luck smiled on me, and I found an immunologist an hour away who ran a clinic for the disease. He explained how it worked and wanted to know my story and how the illness was affecting me. In fact, he told me that he had taught medical students and one of the things he drilled into them was that if what the patient is telling you is different from the tests you run, listen to the patient and dig deeper. His early death was a huge loss to me, his patients, and the students he taught.
I hope new doctors learn this skill. It’s so badly needed. I’m typing this with inflamed eyes because a young eye doctor I saw last week didn’t listen when I told him most eyedrops inflamed me. I explained that I needed a very low dose of the dilation drops. He didn’t hear a word, and now I’m paying for it.
Pris Campbell
Lake Worth, Florida
23 thoughts on “Finally”
It was insult upon injury that most doctors told me I was just tired from a stressful job or was depressed and needed to get out to exercise and socialize more., take antidepressants. DUH! I was depressed because my body was no longer capable of exercise, they had it backwards. It was depressing that nobody understood what was wrong,
nobody had answers, and they doubted my experience even though I was a former marathoner. Gave them articles about MECFS which they tossed in the trash. Demeaning, kick you when you’re down. Now I don’t mention my diagnosis to avoid more disbelief, abuse.
Lisa, so familiar . I don’t mention mine either unless I need to. So hard to be ill and demeaned on top of it
I was hoping that some of the health care workers who read this journal would read this article ad comment. Maybe they will yet.
I was very lucky here in the England, a young doctor from my practice was savy and sent me to a local specialist for diagnosis. A clinic, held under the auspices of a Pain clinic also dealt with CFS/ME and no doubt fibromyalgia. There I learned useful techniques such as logging, how to block negative thoughts and how to set up Rules for the number and duration of various activities. When I discovered Bruce Campbell’s site, I was able to hit the ground running as I knew when my best, most energetic time of day was and and the importance of flat rests. I was also primed to trade off my energy draining activities and not try to add more to my day.
Alas, not all GPs at that practice were so well informed and with the trials using Graduated Exeercising and CBT ongoing for nearly 10 years, were not encouraged to look at the picture I was lucky enough to have had.
As I have no ME/CFS symptoms that are “treatable” with medication, I’m managing my own illness with the Cambell-Lapp site and Workwell Foundation’s guidance.
The very recent Bateman Horne Crash Course Survival Manual will no doubt also inform me when I inevitably over-stretch myself.
You truly are lucky to have found guidance almost from the beginning. How wonderful!
I am so sorry for your Sad encounters. When will we physicians and other health professionals learn that there is no separation whatsoever between and among the spectrum of physical and mental disorders. What the patient experiences is the reality, and it is an irresponsible cop out to blame the patient or accuse the patient. Each time this happened the irresponsible health ‘professional should be Informed and when necessary steps taking beyond that.
Joseph,
Thank you for your most compassionate and understanding reply!!
I am one of the few who are fortunate to find a caring doctor early on – my neighbor, an orthopedist whom I was seeing for another issue diagnosed me and recommended a local physiatrist. She then diagnosed my fibromyalgia; I learned later that the orthopedist had talked to her about me and that he suspected fibromyalgia. Ironically I had been seeing her for a rotator cuff injury that eventually had become chronic pain and likely was the cause of the fibromyalgia. So little was known about fibromyalgia in 1994.
I’m so pleased when I read that you and others found help early on!
This article, unfortunately, has also been my experience with ME/Fibromyalgia and the medical community. I have not had the luxury of seeing a specialist but have learned from Dr. Bruce Campbell’s online classes. There is something inherently healing in being heard and believed. After years of having my concerns minimized or dismissed, it is hard for me to trust doctors and sometimes myself. The doctor mentioned who was compassionate and taught his medical students to listen to their patients sounds like a gem, and his early death is a loss for everyone. How often have I heard things like the labs do not indicate that, it can’t be as bad as you say, or even doubted when I tried to correct an error in a chart. Yes, you do have that disease because it is in your chart. Thank you to the doctors who teach students that their patients know their bodies and symptoms.
Martha,
Yes, having someone to really hear is so important. If I have to see a specialist once or twice for something else I usually just say I have a neuroimmune illness in the paperwork because I still can be informed, that I just need to exercise by someone who knows nothing about me,
This article describes the fight most of us have had. When I was first ill I went to see 17 different doctors and one of the rheumatologist I saw told me outright that she didn’t believe in “chronic fatigue”. I ignored her b/c I knew she was wrong. I then found a counselor who had recovered from CFS and she told me about Bruce Campbell’s website. I joined his group and it has been life changing.
Seventeen. Am i surprised??
That pacing group has been a lifesaver for so many of us. We don’t become ‘cured’. We learn how to cope and function as well as our bodies allow..
I, too, have struggled and struggled to find health care providers who would/do listen to me. I, even still, hear recommendations to just get up and move more and all your problems will go away. If it were that simple, I’d do it to relieve all the pain and fatigue I feel. Unfortunately, it just gets worse when I do that!
I struggled as a teenager with an aching body and fatigue. Since there wasn’t anything “wrong” with me, I thought everyone had the sensations I had and I was just a wimp. I learned to cope by pushing through… everything! In my 20s the fatigue worsened (of course I had babies then). My 30s brought even more worsening fatigue (and more babies) and food allergies, but no blood tests showed anything so I continued to push through thinking I was just a lazy person. Then, my 40s hit, and my world shattered! The fatigue was horrible and the pain was almost unbearable. It seemed like every time I moved a muscle, the pain increased. I woke up feeling just as tired as I went to bed. The food allergies climbed to over 40 foods and migraines were almost daily. Still, my doctor would run blood tests and everything looked fine so he said nothing was wrong and just take Tylenol for the pain.
I was a nurse. I had a working knowledge of medicine and knew blood tests couldn’t show everything. I also knew this level of pain and symptoms couldn’t be nothing. All my doctors just would say, “You have 5 kids, of course, you are tired.” They wouldn’t hear me when I said, it wasn’t just tired… it was a level of exhaustion that was almost indefinable.
The next viral attack proved to be the last straw and now I am almost couch-ridden. Still, my doctor wouldn’t listen to my cries for help. It wasn’t until a friend of mine talked to a friend of hers, my future doctor, about my symptoms that I finally found someone to listen to me. She may not be very knowledgeable about this illness, but she is willing to learn and try things with me. She doesn’t have her nose stuck in outdated textbooks. Now, if I could just get all the specialists to start looking at ME instead of their textbooks, we might get somewhere.
I can’t tell you how many stories like yours I’ve heard. That downhill slope with no-one in medicine who believes you is devastating….and then your health is finally shot. I’m so glad you found someone now who will listen and is willing to learn.
I have been dealing with ME/CFS for 30 years. Dealing with doctors has been traumatic for me as well & I avoid it as much as possible.
I am informed, very intelligent, provide resources & they still don’t listen.
My Dr keeps referring me for Physical Therapy & appointments I cannot attend because I am 98% bedbound which I have told her over & over. She sends me exercise video programs!!! Exercise is contraindicated for people with NE/CFS. Which I have told her, repeatedly. It’s unbelievable!!!
DO NO HARM MEDICAL COMMUNITY!!!
I feel this medical behavior is extremely abusive & clearly malpractice & very wide spread. Maybe we need to start a class action suit for the Medical community to wake up.
It shouldn’t amaze me but it does amaze me that doctors still are umaware of post exertion malaise and how that’s a key symptom of our illness. Even the CDC finally has on its website how serious our illnesse is and how damaged we can get from an programmed exercise program as a ‘cure’. It’s about all many if us can do to do asimple ctivities of daily living and use our heart rate and other measures to move our body only as it suits our own health. Flr example, I’m able to do some stretches and go twice a week with help into our pool and move my arms and legs. Many can’t do that much without a major setback.
I really hope you can find a doctor who will listen and not someone who keeps telling you the same thing over and over. I realize that’s hard to do.
I should add that at Dr. Lapp’s office I was told to join an online program led by Dr Bruce Campbell. A program that would help me learn to live with this chronic illness and possibly get significantly better. I signed up for the next available opportunity. It was life- changing.
I’m in that program, too. It’s so helpful with managing this illness. I also was fortunate to get into Dr Nancy Klimas:’s Neuroimmune program a few years after my doctor died. They’re excellent.
Thank you for this. I lost count of how many physicians I saw. But in addition to a long list I also spent 10 days having testing at a famous medical clinic. They found nothing in the tests so sent me to their psychiatric department. A psychologist there said she thought maybe I had chronic fatigue syndrome – but it was not recognized as an illness at that clinic. She suggested I look for a specialist. Out of the handful in the US I was fortunate to find the office of Dr Charles Lapp and Dr Laura Black. What a difference that made!
This is all so true (sadly). I was lucky enough— Lucky for me, not her— to have had a friend who had ME/CFS before I did. So I basically diagnosed myself and then it was an issue of trying to talk the doctor into it. I am an ex-medical person myself and I have to do a lot of advocating. I sure wish that your doctor friend would not have died early.
This is such an honest reflection of the uphill battle I also had (and still have at times) in getting diagnosed and taken seriously with ME/CFS
I hope what you went through, and what Karen went through, with her M.E., never happens again. We were directed to Dr Dowson, who stepped down from being a GP (UK) in order to help people with immune damaged conditions. He’s retired now, but we need thousands more like him and of all genders.
As you know, I wish you constant good things in your life!
Alan
Thank you for commenting, Alan. I’m glad Karen found a good doctor, too.