There’s been quite a bit of conversation going on in different places about the upcoming Diagnostic and Statistical Manual 5 (DSM-5), which will finally make itself useful in May 2013. There’s a lot of controversy over various elements of it and I could take up many posts just discussing those. I must remember to get back to the intended change of name for Borderline Personality Disorder (BPD).
For today though I want to talk about the issue of the stigma against mental illness and how it is making itself seen, and heard in the fibromyalgia world. At the outset it’s important to point out that fibro is NOT a mental illness, nor is it categorised as one. But there is a new disorder mentioned in the DSM-5 that has a lot of people with fibro worried.
Under the DSM-5 there is a new diagnostic category called Somatic Symptom Disorder (SSD) which will apparently mislabel some people with medical disorders as have a mental disorder.
A person will meet the criteria for SSD by reporting just one bodily symptom that is distressing and/or disruptive to daily life and having just one of the following three reactions to it that persist for at least six months:
1) ‘disproportionate’ thoughts about the seriousness of their symptom(s); or
2) a high level of anxiety about their health; or,
3) devoting excessive time and energy to symptoms or health concerns (1.)
The concern of fibro patients I have been reading of in recent days is that their fibro will be re-labelled as SSD if they have this high level of anxiety and thought to their fibro symptoms. As a fellow sufferer of fibro I know all too well that it is very hard not to be anxious about symptoms. They are literally new every morning, and there is a constant worry over how to treat, and manage the symptoms as well as getting through daily life. So I get their concern that they might be labeled with SSD.
Do I want yet another label? Not particularly, but I fail to see the whole issue with quite the level of dismay I have read recently. I will still be a fibro sufferer, and therefore a medical patient. SSD does not take away my fibro. Regrettably what it does is give me, and no doubt millions of others, an extra label.
I know for many fibro patients, they fight hard against suggestions that fibro is ‘all in their head’ and has a psychological component. For me though, I am quite happy to accept that there is a psychological element in my fibro, and actually one of the most helpful treatments I have is access to my psychotherapist.
That doesn’t mean my pain and fatigue isn’t real. I can assure you it is. But I recognise that my emotional well-being plays a part in how much pain I am in. Most people though, don’t want to think this way and I suspect that stigma and the general public’s view of mental illness is the reason for this.
What concerns me is the fear that I have seen fibro patients display as they write about being labelled as having a mental illness.
“WTH! I’m not mental!”
“This is such BS!! I know my pain is real and not in my head and has it made me crazy? Yes!! But I wasn’t before fibro moved in!!”
“this made me want to cry… people already do not believe me so I push myself everyday to prove some one hurting so much everyday can be strong…. so they call us crazy when we just want to know whats wrong with us, be normal, and happy…”
“My doctor told me all fibro patients just need a good psychiatrist !”
“the pain is more than real…its not in our heads!!!”
“I have nightmares about people close to me not believing what I go through with FM and belittling the severity of it. I wake up crying and feel awful for hours afterwards.”
“Please don’t make it harder for all of us than it already is. We are in enough pain as it is.”
“This is not a made up illness. It is real. People are suffering immensely.”
“The pain is REAL. I have it right this minute in my whole body and it is excrutiating (sic), is that all in my head.”
If you are led to believe that your medical illness will disappear, and be replaced by a mental illness that takes no account of the level of pain and suffering you experience on a daily basis, then I can understand people being concerned. But I don’t think that is exactly what is happening.
What does concern me is that when I read the comments above, I see how fearful people are of being labelled with a mental illness. From this range of comments is suggests that people see mental illnesses as made up, not real, all in our head and of no significance.
And while I know first-hand that the pain of fibro is very real I know that the pain of mental illness is just as real, if taking a slightly different form.
All I can take from this is that while fibro sufferers have a shared fear of not being taken seriously, more worrying to me is the sheer size of stigma which makes people fearful of having a mental illness. If everyone shares this fear, then they are likely to not seek treatment if they think they have any sort of mental illness.
Actually mental illness is real, but it is also survivable. If the SDD diagnosis can be used carefully and appropriately then maybe people with overwhelming and disabling worries about their illness, whatever it is, can be helped. That doesn’t need to stop people with fibro getting the treatment we need.
I am inclined to think there is a little scare mongering going on. A little information is blown out of proportion. And then the masses get scared. Maybe I’ll be proven wrong. But then I’m so used to mental illness, another label really won’t worry me. I’ve got plenty already. It does seem though, that stigma is alive and kicking and it’s not at all helped by scare tactics.
- What My Doctor Won’t Tell Me (infinitesadnessorhope.wordpress.com)
- Your Physical Illness May Now Be Labeled a Mental Disorder (psychologytoday.com)
- Mislabeling Medical Illness As Mental Disorder (psychologytoday.com)