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

  • 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.

  • @gretch @river This. I wholeheartedly agree, and would like to add to the conversation.

    The biggest resistance I encountered towards being diagnosed wasn’t the doctors completely denying ME/CFS but that they couldn’t be certain I didn’t have something else, and therefore would not commit to diagnosing me. Even though I’d been repeatedly coming to them for months, and they had so far failed to find anything. I wanted to scream at them that no diagnosis would do just as much damage; without it I couldn’t get the help I needed, or tell my friends exactly why I couldn’t hold a conversation with them anymore.

    But at the same time, I knew where they were coming from. I know someone who was diagnosed with ME/CFS decades ago, and that in receiving this something very important was missed. It could have killed her, and it almost did. But even though she had something else, that didn’t mean she didn’t have ME/CFS as well (In fact it triggered the ME/CFS). Thanks to her, she was the person who helped my mother come to terms with my ill health - and who helped point us in the direction of support.

    Once I found a good doctor I had various tests. We weren’t expecting anything, but it was to rule out something life threatening.

  • @Simone_Em_Aus I kind of wish someone had locked me up and told me not to move for a year! That's the tough bit - most people have to work and take care of themselves and perhaps an entire family. It might be easier just to tell yourself to do as little as possible, including mental activity.

  • Community Moderator

    @Aur said in What do you wish someone had told you when you were newly diagnosed?:

    @Simone_Em_Aus I kind of wish someone had locked me up and told me not to move for a year! That's the tough bit - most people have to work and take care of themselves and perhaps an entire family. It might be easier just to tell yourself to do as little as possible, including mental activity.

    It’s so much easier said than done, isn’t it? And, as you say, so many have responsibilities which are unavoidable. At least if we’re told right at the beginning, we can do as much as we can, and understand the importance of cutting back.

  • @SandyAtHome I so relate to this!

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