i'm a freaking mess.
i'm one rheumatologist's appointment away from being diagnosed with chronic fatigue syndrome. and it comes with a host of emotional issues. and boy, am i feeling them.
All chronic illness carries with it a burden of complex emotions. In that respect, CFS/ME is no different. Many patients have an acute onset to their CFS/ME. They move suddenly from a situation of good health and full activity to a situation of pain, exhaustion and inability. Previous activities which gave identity and meaning to life are no longer possible. The prognosis is uncertain and patients do not know how long their illness will last. They don’t even know if they will recover. In common with other chronic illness, feelings of frustration, isolation, loss of self esteem and even despair are part of the unwelcome package of emotions that have to be coped with.
In CFS/ME, the controversy over the nature of the illness can raise particular problems. It is difficult for both doctors and patients to deal with an illness where all tests and investigations give negative results. Patients often feel that they are battling against disbelief to communicate that they are exhausted or in pain and that that they are genuinely unable to carry out activities they were previously able to do without difficulty. The role of the doctor can become very perplexing in a situation which lacks the clarity of a clear diagnosis supported by abnormal test results. Doctors may fear that they are colluding with the patient if they accept that the patient is really ill. Yet where acceptance is withheld, patients can, and usually do, feel blamed for becoming ill.
Many patients report feeling isolated and stigmatised - as much by being unable to explain to others why they are ill, as from the restrictions imposed by the illness itself.
Where the experience of an individual is not validated, this can leave a difficult vacuum where full expression of anger or loss or fear does not feel permissible. Powerful and painful feelings are not acknowledged as reasonable responses to the situation and are therefore not processed.
The mental fatigue associated with CFS/ME may also make effective emotional processing more difficult. Patients commonly report that mental fatigue (often described as ‘brain fog’) reduces their ability to analyse feelings and to connect emotions with events in a coherent pattern. Many patients report increased emotional lability. As yet, we do not understand the mechanism for either of these effects.
...Maintaining factors [for chronic fatigue syndrome] may include: Catastrophic illness beliefs by patients, carers or health professionals (for example, believing that CFS/ME is untreatable and recovery is not possible)
Well, at the moment I'm not feeling as catastrophic as I was a couple of days ago: that my life was over and that I could never get better. But I'm still pretty skeptical, emotionally exhausted, and emotionally labile. It's like my heart is an open wound and the slightest touch hurts. And there's also the complex emotions that come with that emotional lability. I feel guilty for it, especially for my irritability (both irritability and emotional lability are VERY common symptoms of CFS). When I get irritable with people, I upset them, and then I feel guilty. And I feel guilty for my own feelings and for not controlling them better--when it's debateable how much control over them I actually have at this point, considering the CFS. And then I feel like I'm trying to come up with excuses for my bad behavior. And then I feel like my behavior wasn't that bad and people shouldn't over-exaggerate and can't they see I'm suffering here?? And then I feel angry and guilty and sad all at once...
Like I said, I'm a mess. I feel like a cat: I want to be hugged ALL THE TIME except when I DON'T and even when people do things to support me emotionally, even *I* can never predict what my reactions to their reassurances are going to be. Sometimes they're sarcastic, bitter, and disbelieving, even when the person is giving me exactly what I thought I wanted.
I'm such a fucking mess.
All chronic illness carries with it a burden of complex emotions. In that respect, CFS/ME is no different. Many patients have an acute onset to their CFS/ME. They move suddenly from a situation of good health and full activity to a situation of pain, exhaustion and inability. Previous activities which gave identity and meaning to life are no longer possible. The prognosis is uncertain and patients do not know how long their illness will last. They don’t even know if they will recover. In common with other chronic illness, feelings of frustration, isolation, loss of self esteem and even despair are part of the unwelcome package of emotions that have to be coped with.
In CFS/ME, the controversy over the nature of the illness can raise particular problems. It is difficult for both doctors and patients to deal with an illness where all tests and investigations give negative results. Patients often feel that they are battling against disbelief to communicate that they are exhausted or in pain and that that they are genuinely unable to carry out activities they were previously able to do without difficulty. The role of the doctor can become very perplexing in a situation which lacks the clarity of a clear diagnosis supported by abnormal test results. Doctors may fear that they are colluding with the patient if they accept that the patient is really ill. Yet where acceptance is withheld, patients can, and usually do, feel blamed for becoming ill.
Many patients report feeling isolated and stigmatised - as much by being unable to explain to others why they are ill, as from the restrictions imposed by the illness itself.
Where the experience of an individual is not validated, this can leave a difficult vacuum where full expression of anger or loss or fear does not feel permissible. Powerful and painful feelings are not acknowledged as reasonable responses to the situation and are therefore not processed.
The mental fatigue associated with CFS/ME may also make effective emotional processing more difficult. Patients commonly report that mental fatigue (often described as ‘brain fog’) reduces their ability to analyse feelings and to connect emotions with events in a coherent pattern. Many patients report increased emotional lability. As yet, we do not understand the mechanism for either of these effects.
...Maintaining factors [for chronic fatigue syndrome] may include: Catastrophic illness beliefs by patients, carers or health professionals (for example, believing that CFS/ME is untreatable and recovery is not possible)
Well, at the moment I'm not feeling as catastrophic as I was a couple of days ago: that my life was over and that I could never get better. But I'm still pretty skeptical, emotionally exhausted, and emotionally labile. It's like my heart is an open wound and the slightest touch hurts. And there's also the complex emotions that come with that emotional lability. I feel guilty for it, especially for my irritability (both irritability and emotional lability are VERY common symptoms of CFS). When I get irritable with people, I upset them, and then I feel guilty. And I feel guilty for my own feelings and for not controlling them better--when it's debateable how much control over them I actually have at this point, considering the CFS. And then I feel like I'm trying to come up with excuses for my bad behavior. And then I feel like my behavior wasn't that bad and people shouldn't over-exaggerate and can't they see I'm suffering here?? And then I feel angry and guilty and sad all at once...
Like I said, I'm a mess. I feel like a cat: I want to be hugged ALL THE TIME except when I DON'T and even when people do things to support me emotionally, even *I* can never predict what my reactions to their reassurances are going to be. Sometimes they're sarcastic, bitter, and disbelieving, even when the person is giving me exactly what I thought I wanted.
I'm such a fucking mess.