More on Chronic Illness

I just read this article in the New York Times which is just soooo not what someone who has been sick on and off for years wants to read. It is an article about somatization syndrome. I’ve never heard of it before now, but it seems to be a situation where someone has aches, pains, fatigue, dizziness, or other various symptoms for which doctors cannot find a medical explanation. So you know what? Then it becomes a psychiatric disorder. I googled this and there apparently are actually people who really do have this. That is, physical problems are caused very directly by psychiatric issues and the people need psychotherapy. All well and good. But for those of us who do not have a psychiatric disorder and something actually is causing our fatigue, stomach aches, head aches, decreased immune system functioning, or whatever symptoms there are, this gives doctors such an easy way to say it is all in the head and just get some therapy. Can’t figure it out? Just chalk it up to somatization syndrome.

This reminds me of my most recent doctor who suggested I meditate as a response to my health concerns. Maybe she secretly thought I had this. Ugg. Luckily, the first site that comes up when you google this is a site that helps reassure those with Chronic Fatigue Syndrome or Fibromalgia (two very difficult to diagnose disorders that often interfere quite a bit with one’s every day life) that a doctor who is familiar with the various disorders will know how to differentiate between them. Of course, the problem is that many many doctors don’t know how to recognize or treat either CFS or Fibromalgia, along with 100s of other rare or complex problems that people live with for years because they are not correctly identified. Sigh. Sigh sigh.

While I’m certainly glad that people with somatization syndrome are able to be well-diagnosed and get treatment, I just hate to think about all the people who actually do have a non-psychiatric medical issue that are put in the “somatization syndrome” box. It is just so frustrating and sad that so many people suffer for years with medical issues that doctors cannot adequately recognize or treat because medical training and practice is so scientistic and regimented – so unholistic and so inattentive to the complexity of medical problems that don’t fit into any of the pre-established boxes.

9 Responses to More on Chronic Illness

  1. LaReinaCobre says:

    This is definitely striking a chord with me today. I truly believe that not knowing what is making one sick is worse than anything else about being sick.

  2. CK says:

    I’m sorry to hear about your problems. Finding a doctor who will listen to you and give you a diagnosis based on good testing and a thorough history can be tough.

    On thing, though–fibromyalgia is not a disease–it is a term for a grouping of symptoms related to depression and psychiatric issues.

    My partner is a neurologist and I have three friends who claim to have fibromyalgia. In some instances, understanding that your ‘disease’ is not a disease can loosen its enabling hold on your life. Sadly, they have not recognized this, and have taken on an identity as ‘sick people’ or ‘victims’, which hasn’t helped their situation. I wouldn’t recommend ‘just therapy’, but a profound shift in their approach–but it’s hard to find a doctor who can help with that.

    Anyway, I recommend looking for .edu and NIH sites when you Google, or using PubMed or library resources. The Internet can be a dangerous place for medical advice.

  3. CK says:

    Oh, and as an afterthought. I don’t mean to say that all unknown symptoms are “in your head.” I have personal experience dealing with (past and present) symptoms which are downright scary and not diagnosed. I wouldn’t want anyone to dismiss them as “just psychiatric.”

    That said, the body and the mind have a complex relationship, and often we require someone else to point out to us how they are interacting. There are diseases which originate from viruses, bacteria, decaying neurons, etc. And then there are the disorders that we unknowingly partner with. They’re not less difficult, but they ought to be diagnosed as what they are.

  4. Elizabeth says:

    Thanks for the feedback from both of you :) It is always so nice to get comments. I agree ck that the web can be a dangerous place to get medical advice and can never replace professional medical advice. That said, it can also be a very helpful place to get information on disorders or syndromes that are not yet understood or accepted in the medical community. It is such a fine line to walk – not wanting to diagnose one’s self, yet at the same time not being able to get satisfactory answers or treatment from the medical establishment. In the case of fibromyalgia, I am not convinced that it is completely related to depression and psychiatric issues and this does not seem to be the consensus in the medical community. It seems that is a collection of symptoms that show up similarly in many people and the reason that that happens is not known. For some, a traumatic event might trigger it, but for others there may be no clear trigger. I know some people do take on a disorder or syndrome as an identity and have a hard time getting past being “a sick person,” but at the same time there are so many people who do suffer so much and would give anything not to be a “sick person” but simply cannot get better no matter how they look at the symptoms, no matter what doctors they see, no matter how much therapy they get, etc. It seems that there are just illnesses that the medical establishment simply cannot name, explain, or treat. But I don’t think that means that it isn’t just a “real” as a “real” disease for which we have a name and explanation. Sorry for the long response. Clearly an topic close to my heart….

  5. Elizabeth says:

    thanks for your afterthought. i think you are also right to say that things need to be called what they are and that there is a complex relationship between the “mind” and “body” – and perhaps too often we don’t ask what our body is telling us by the disease (dis-ease) that it is showing us. often dis-ease can be healed without medical intervention if we are able to hear the messages our bodies are sending us. that said, some dis-ease in the body cannot be healed no matter how hard we try or what ways we try to heal it. having started acupuncture recently, i’ve become increasingly interested in the various models for understanding the body and how it works – eastern and western. so different, yet both quite effective.

  6. UU Soul says:

    It’s an interesting thing, being able to put a name to your suffering. Reading about the symptoms you have been experiencing and saying, Yes! Yes! Exactly! I felt that way when I was diagnosed with fibromyalgia and started researching like mad, reading books and searching the web. One can do intelligent research off and on the Internet (checking sources, etc.).

    CK’s declaration that “fibromyalgia is not a disease–it is a term for a grouping of symptoms related to depression and psychiatric issues” is unfortunate and not fully informed. There is definitely not a concensus in the medical community. Also from my personal experience, I would disagree with that statement and I have learned to value my experience.
    Thanks again for your comments on my post, Elizabeth :)

  7. Paul says:

    From personal experience, I know that once you are given a psychological designation by a psychologist or a psychiatrist it will follow you and such designations are at times in error !

  8. CK says:

    My point wasn’t to dismiss anyone’s personal experience, merely to point out the importance of understanding how psychological factors don’t make a disorder “all in your head”, though at the same time they do impact the way treatment (and research) goes.

    I will disagree with you 100% about the source of fibromyalgia because of my conversations with neurologists at the top of their field and my own reading. But there’s no point in arguing about it. I’m not a doctor, nor is, to my knowledge, anyone here.

  9. UU Soul says:

    In my 10+ yrs of dealing with a repetitive strain injury and fibromyalgia, I had to learn that the experts are just people and are sometimes wrong. In the case of fibromyalgia, the experts are not even in agreement. If what you are being told by a doctor is clearly not helping you, you have to trust what your body is telling you and keep looking for something that does help – other doctors, other approaches.

    When it comes to psychological factors, I have experienced doctors turning symptoms into causes. If you are in extreme pain and are unable to work, it is a natural reaction to be depressed and discouraged. The depression is not causing the pain and other symptoms; it is the result of the pain/symptoms. In the context of treating the sleep problems of fibromyalgia, I tried the recommended low dose of an anti-depressant (which happened to not work for me), but I had to refuse to go on an anti-depressant when another doctor over-reacted to my being depressed about having a flare-up of my symptoms and not being able to work again. It is ridiculous to medicate a natural reaction. I never regretted that decision.

    I stopped focusing on the specific diagnoses years ago, and switched to finding the best ways to increase my overall wellness. I use what I learned about my TOS and fibromyalgia to inform my choices, and have figured out what works best for me.

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