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.
Related articles
- 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)
Infinite Sadness... or hope? 
i hate labels. ugh.
I should have given you a warning so you could avoid this post. lol
no it’s okay, i’m not upset! xo
I have seen comments like that making the real potential harm of that diagnosis being ignored.
I have mental illness, fibromyalgia and other hidden chronic illness, I hate the prejudice from some people that have fibro against mental illness. My concern about this new diagnosis is not so much about fibro or about a new label, it’s about lack of medical treatment towards all hidden chronic illness, it’s extremely hard to get treatment if you have a complex illness, if you have a mental illness diagnosis or if you act a certain way, your physical symptoms will be ignored, there are people with progressive and deadly illness without treatment because they have a mental condition, doctors don’t listen to their patients anymore, if a patient acts weird, anxious, has strange behaviours or is on psychiatric drugs any symptoms are ignored by doctors and medical especialists. This already happens without this new diagnosis, with this on the DSM it will be harder to get treated or to be heard, there will be a “valid” excuse to ignore more patients.
In the end that diagnosis is not scientifical, it lacks enough definition and it’s too broad, anyone can be diagnosed with it if they have a chronic illness without any benefit and making treatment more hard to get.
It’s like getting the worse excuses I got when doctors refused to treat me because all had was apparently psychosomatic and making it official on the DSM. I’m less anxious about my symptoms than I am about being ignored by doctors, luckily there is no category for that.
The main professionals to work with diagnosis from the DSM are mental health professionals like psychiatrists, they have nothing to do with chronic illness that are not mental illness so why is there a diagnosis on the DSM that can be used for most chronic illness sufferers?
The harm is greater for progressive and deadly illness, someone can lose the opportunity to be treated early if they get this label, women already receive psychiatric labels for physical complains more than others when they should get treatment, people with other kinds of mental disabilities that have odd behaviour get ignored too, people with epilepsy receive diagnosis of mental illness with drugs that make them more sick and sometimes never get help, too many people will lose opportunities for treatment and while mental illness and physical illness are both real the treatments are different, someone with a physical condition shouldn’t get treated with therapy and psychiatric meds and receive no other treatment. What if people with rare conditions get it? People with a form a cancer could fit the definition if they have an anxiety disorder.
The harm that can come from it outweights any possible benefit, I actually can’t see a clear benefit, especially with the lack of clear definition in this new diagnosis and the polemics in the new DSM.
In reality people struggle a lot to receive the right diagnosis, it’s hard to find a good professional that listens and can use diagnosis correctly, both in mental health as in general, people are already harmed by concepts as psychosomatic symptoms when professionals use this constantly to refuse treating patients for physical symptoms and refusing to investigate when they don’t know what a patient have, doctors never say they don’t know what is wrong with a patient, now they can stop saying “it’s psychosomatic” and can say “it’s SSD”. With such a poorly made category, arrogant doctors with no time to listen and inquire, prejudice against complex hidden illness and the fact most people forget people with mental illness/disabilities get sick too, the possibilities of this causing harm are too great to be ignored.
Obviously that category has not been defined with the help of people that live with chronic illness but with the limited views healthy non-disabled people have of us.
Sorry about the very long comment, it’s an important topic for me since I have been looking for treatment for my mental illness, medical conditions (besides fibro) mental disability and doctors ignore the fact people can have all of the above conditions together, prejudice from the chronic illness/fibro community are definetely not helpful for me.
No need to apologise. I appreciate your comments. I think that SSD is a real problem and I can see half the population ending up with the diagnosis. It will be a bit like the common cold. I completely understand what you’re saying but I’m not convinced it will be a problem for people with fibro. I see it that people will still be treated by a rheumatologist for the fibro, but that the SSD will be extra. What really worries me is how scared people are of being labelled with a mental illness, because that suggests the general population are like that and therefore there must be thousands who won’t seek treatment because of their fear. I think it just suggests that the mental health world is going to have to do a lot of education and work to stamp out the fear.
I agree about the stigma of mental illness, I have met people with fibro and articles/books full of prejudice about MI, it’s really sad and considering the high comorbidity of fibro and MI it’s a surprise, a part of fibro is depression but I think it’s less associated with MI. Luckily not everyone thinks like that.
About SSD, I see one implication for people with fibromyalgia, people who don’t have diagnosis and don’t know they have fibro will have to wait more to get a right diagnosis, is already common for people with fibro to wait years before being diagnosed properly because it doesn’t appear on tests, I can see people with fibro without information and a correct diagnosis not getting the right treatment because of SSD. For people who are already diagnosed it should be less problematic, maybe new doctors that don’t believe fibro is real will use SSD to try prove it’s not real the same way some doctors wrongly use psychosomatic to say it’s not real, the fact that this is on the DSM does gives that excuse a little more power.
I think it’s vital that the image of mental disabilities needs to change, sadly that is hard to do and the general population is still ignorant and refuses to see reality.
Thank you following my blog. 🙂
What you’re saying about SDD makes sense. It is hard enough to get an accurate diagnosis already. I just read another article about fibro and thought I’d share it. Seems we’re in for yet another label. Have a look at this… http://chronicfatigue.about.com/b/2013/01/16/central-sensitivity-syndrome-umbrella-term-for-fibromyalgia-chronic-fatigue-syndrome.htm?nl=1
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It’s not the diagnoses that causes the problem, it is the stigma that comes with it. Very frustrating Cate.
Yes, you’re quite right. I suspect it’s a never ending problem.
I haven’t been in the best place lately, which has made me not the most faithful of readers as of late. But I’m so glad I read this post tonight. It was a good look into how stigma still exists loud and clear.
Those comments are frustrating to read, but it really does show the fear. I can understand their worries, but at the same time something strikes me. As you stated, from the comments some people say that mental illness is just “in our heads”. While technically that’s the case, as it is our brain that is causing it all, but it is not made up. It is very real. However, just as those people commented that they already struggle with people believing the pain they’re in, some of those same people are putting mental illness into that same boat of not being believed… of it being made up. I find that frustrating.
I agree with you, though, about the fear mongering. I think some people took it and blew it up. And, when it comes to the Web, it doesn’t take long for such explosions to have significant fallout. I sure hope that the DSM is responsible in their wording and explanation of SSD, because they – of all people – should know what negative result can occur if not worded properly. At least one would think they would. When it comes to SSD, I only know what I’ve learned from this post, however I plan to educate myself more on both SSD and all the other changes. From what I read here, it almost sounds like it’s a more fancy name for a hypochondriac though, and I don’t like that either.
I really can’t stand the stigma of mental illness and it’s so frustrating. Shortly after the shooting at Sandy Hook Elementary school, I had read many online comments from people that asylums should be made prominent again, and that everyone with a mental illness should just be locked up in asylums to keep everyone else safe. Then, to top it off and make the fear issue even more difficult to hear and read about, one of my own family members posted something similar to that on Facebook. She said all crazies should just be locked up to make everyone else safe. It’s cruel and hurtful thinking that is founded on ignorance about mental illness. If we can only destroy the stigma, so much could change for mental health. Until then, we sufferers and our true supporters can only dream and keep trying to destroy it ourselves.
Thanks for this post, Cate. It was informative and insightful!
Summer
Hi Summer, I’ve missed you. I hope you’re doing okay, and if not remember that you are much loved. You know the irony of “It’s all in your head” has hit me more than once lately because as you point out it is literally in our heads. That’s where our brain is and we can’t escape that. The stigma that people with fibro seem to relate to is very strong, and unfortunate.
I hate what your family member posted. That is so hurtful, not just to you personally but to all of us who fir under that terrible ‘crazy’ umbrella. I so wish people would learn to think and have some compassion. I suspect that until they do, stigma like this will always be around and that is so sad because it simply makes out job so much harder.
Take care of yourself Summer and thanks for reading my post. Sending hugs your way
Cate
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Just found your blog and read a few of your posts and enjoyed them very much. Had to smile and lol a few times. I’ll be coming back! My link here will take you to my other blog Lila’s room with views but I have a fibro blog here on WP also it is Lila Lost in the Fibro Fog. I’ve recommended several of your posts on my most recent post.
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