What do you wish someone had told you when you were newly diagnosed?

  • Community Moderator

    I’m curious about the experience of forum members with getting a diagnosis. What would you say to someone newly diagnosed that you wish someone had told you?

  • Community Moderator

    When I got crook back in late '98, the only medical advice I got was "drink less and exercise more" (to be fair, the first one wasn't a bad idea!) The big thing I tell anyone who's new to it that asks is to let their body 'go gently' - learn about PEM, and avoid it as much as the rest of the world allows. Concepts like living within one's energy envelope, and spoons and all that, but is, in-effect, pacing, which Emerge has a great page on (with a fact sheet that is well worth reading).

  • It took seven years for me to be diagnosed, so at first I wish someone would have said to me "trust yourself... no one know your body like you do". I knew I wasn't a hypochondriac but I was sure made to feel that way by doctors in the beginning.
    Then, when I was diagnosed I was told that there was nothing could be done to help. So I would say to those newly diagnosed, keep searching for a doctor that has some knowledge in the disease if you don't already have one. I wish I could go back and tell myself to STOP PUSHING, learn and implement pacing from the beginning.

  • Community Moderator

    @Daffy_Dave Learning about PEM, the energy envelope and pacing early on would have made such a difference for me too.

  • Community Moderator

    @SandyAtHome Seven years is such a long time! It would’ve been so hard to keep trusting yourself for that time, when doctors weren’t listening, or didn’t know what they were seeing. You’re so right about needing to trust ourselves, and that never really goes away, does it? I mean, we need to keep advocating for ourselves with doctors to get the test, supports, treatments we need. It never ends!

  • Quite a few people I've met said that their doctor did not believe them or misdiagnosed them when they explained their developing chronic condition. They often went home dejected with the thought that 'the medical fraternity does not understand ME/CFS', but its more likely the case they had an ill-informed or disinterested GP. So I always recommend looking for more informed and empathetic GPs if you feel let down, especially if you live in a city where there is lots of choice. I was lucky to have an experienced GP from the start, but last year when I broke my wrist I went to a main street medical centre for an X-Ray script and asked the GP 'by that way, if someone comes to you saying they believe they have CFS, what would you do?' "I'd send them to a psychiatrist". That just confirmed my suspicions of the patchy level of engagement in some practices.

  • You're right @Simone_Em_Aus, we have to be our own advocates and that can be exhausting even for a healthy person. I really do believe that if I had of had support early on in the disease I would not be housebound now. My 20 year old daughter is newly diagnosed and I'm saddened to see the same ignorance in some specialists and doctors as there was fifteen years ago.

  • As others have said. Please pace yourself and listen to your body.
    Don’t push yourself is what I needed to be told.
    It doesn’t work.

  • This is a great question. I'm keen to hear what forum members have to say. For myself, I wish I'd actually been diagnosed early on. I went a very long time without formal diagnosis. I wish I'd been told that the push crash cycle was actually dangerous.

  • @SandyAtHome "trust yourself" is such good advice. I knew something was very wrong, but I thought that "getting fit" would fix it...I tried again and again because I was told my muscles were hypotonic and that being unfit was causing my fatigue.

  • I would say educate yourself...it's great if you find a medical professional who has a good knowledge of ME/CFS, but they seem to be so rare that self-education is vital. That's why Facebook groups and forums like this one are so important.

  • I wasn't diagnosed until 3 years into the illness. I wish that doctor had told me to rest, rest, rest instead of prescribing a stimulant and referring me to a GET provider. Luckily I knew enough by then to know that exercise therapy would be a waste of time, and I didn't go, but I kept pushing myself to work, do housework, go for short walks etc. A few months later I took on too much work for too long - and down the hill I slid into my first big crash.

  • I wish someone had told me about co-morbid conditions to get tested for. POTS, Fibromyalgia, MCAS, MCS, fructose malabsorption, etc. It was more than 4 years before I found out about POTS and fructose malabsorption issues. A simple standing test lead me to a POTS diagnosis and subsequent medications that drastically helped my orthostatic intolerance, high heart rate (tachycardia), near fainting (pre-syncope), breathlessness, heat intolerance, etc. So, yes, gaining understanding and diagnosis of a co-morbid condition (common to ME) opened many doors to treatments for individual symptoms, some relief from the burden of so many symptoms and an increase in my overall functional capacity.

  • I wish someone had referred me to an occupational therapist sooner. In my experience, most doctors have no interest in quality of life or scientific theory - it's not part of their job description. Quality of life is the arena of occupational therapists, and scientific theory is the arena of researchers. Unfortunately people with CFS are sent to doctors, not occupational therapists or researchers, typically. Seeing an OT was life changing for me, and not just because I got a wheelchair out of it. Feeling like someone actually cared about my well-being and my function, rather than just what showed up on my blood tests, was incredibly healing.

    In addition to what many others have said about pacing, I wish that literally any of the doctors I've ever seen had suggested to me the various supplements that support mitochondrial function. It seems like a no-brainer, given what we know about this illness, but if I hadn't been in patient support groups, I would never have even known these options existed.

    In general, I wish my doctors had kept up to date with all the latest research on CFS, instead of pretending that such research doesn't exist. I wish my treatment had been informed by the work-in-progress science instead of out of date "evidence based treatments" like antidepressants. I wish that more interest had been shown in my quality of life and the theoretical aspects of understanding my illness.

  • I would have to say - who to see for more advice and where to get help. The me/cfs society helped me out a lot and also a friend with the same condition that I met through the youth group run by the me/cfs society. It is very hard to manage energy consumption and to pace oneself. I always did too much at the start and pushed to hard and paid for it by increasing my fatigue and reducing my general function which meant that I ending up doing less that I had hoped to achieve. There use to be a phone link up course on managing fatigue and various symptoms which I would highly recommend.

  • In hindsight, I wish I had been told the severity of the illness/disease and given more information on managing the symptoms, although the diagnosis was crucial in understanding what was going on with my body. My experience has been, and still is, a struggle to learn how to live with it.

  • I wish I hadn’t been told to do graded exercise, or been prescribed some trials for some drugs that I found had some very scary side effects.

    At the point of diagnosis though, it was no surprise. I’d already been completely sure I had it for over a year. I wish people didn’t tell me they were “Sorry,” like the diagnosis was a bad thing. I threw a (greatly downscaled) party when it happened, it was something to celebrate. Even though it’s mostly ignored by every other doctor I’ve been to, it still holds so much more weight than my history of referrals to psychologists and psychiatrists.

    I’d also like to note that a lot of GPs are overworked and simply can’t learn or keep up to date about CFS/ME, or show the compassion and wholistic look at health that is needed. The doctor who I feel really helped me ran her own clinic and so she was able to take the time every one of her patients needed (though she was not the one who diagnosed me, that was a specialist)... 15 minutes is the length of time allotted for an appointment with a GP, it is not enough. (I reason it like this, and since I did so, it helps me let go of so much underlying anger. Though maybe I can because I found a doctor who restored a modicum of faith in medicine)

  • I wish I had known more about the condition and was not lead down the path of mental health and that I contributed to this condition, I made myself sick. I am a positive person and think I am amazing 🤩 that I manage as well as I do.

    In saying that, there is much benefit to self reflection 🙏.

  • Community Moderator

    I was fortunate to be diagnosed with CFS when I was sixteen by a small town G.P. after only one visit. But unfortunately was also told it was just a catch-all diagnosis because they were unsure what was “really” going on. So spent decades in search of a different explanation for everything that was going wrong. Finally, in my thirties as things were getting significantly worse I looked into the latest ME/CFS research and awareness programs and educated myself. Irony of ironies then couldn’t find a GP who supported my self diagnosis. I’d wear myself and my younger self out trying to tell them everything they need to know but in summary I wish someone had told me CFS wasn’t a fallback or wastebasket diagnosis and to not dismiss management options because you were desperately looking for treatment options. But most importantly I wish someone had told me to be kind to myself and where possible listen to your body and pace yourself but also forgive yourself for the choices made along the way, sometimes pacing isn’t preferable i.e. seeing dear friends you haven’t been well enough to visit in years and often pacing isn’t possible. Of course, I’m still working on all those things in my forties so sixteen year old self may not have been ready to hear it.

  • I wish someone had told me CFS wasn’t a fallback or wastebasket diagnosis

    Oh this...so much this. All my doctors treat CFS like it's not a distinct illness in its own right. They keep insisting they "don't know what's going on with me" and I'm like...I already have a diagnosis that explains everything...but they won't accept it because scientists haven't completely worked it out yet. It feels like they want to give me a separate diagnosis for every symptom, when all of my symptoms are included in the CFS diagnosis.

    I suppose docs are doing the best with the knowledge they have. They don't know how to treat CFS, but they know how to treat some of the symptoms of it, so they try to diagnose individual symptoms and then give you meds for those. But it's frustrating. In my experience, treating individual symptoms as though they exist in isolation, and are not caused by an underlying systemic illness, doesn't always work and can even be harmful. For example POTS caused by CFS is a very different kettle of fish to POTS in isolation. Same with gastroparesis. Treating those and not the underlying cause is like sticking your fingers in your ears so you can't hear the messages your body is giving you.

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