Trigger warning: Trauma, PTSD, suicide
In this post I will write about something that I see as the most extreme consequence of what I call secondary system related stress. Something that is not "just" about worsen an existing condition, but when the system-related stress, adding a person such damage that it could be counted as an additional condition. A new diagnosis. And a risk of a premature death.
When I wrote an earlier post about how my own emotional reactions have changed over time due to the cumulated stress, I remembered that I somewhere read about ME/CFS and PTSD (Post Traumatic Stress Disorder) triggered by healthcare.
I found an interesting article describing how Dr. Nancy Klimas found her way into further research about ME/CFS. In the 1990s, she studied how people with chronic diseases were affected by a natural disaster. One of the patient groups were people with ME/CFS. The study showed that people with chronic disease developed PTSD in a higher level than those without any chronic disease. People with ME/CFS also showed an exacerbation in their chronic condition. But she discovered something else as well: Even those ME/CFS sufferers who were not at all affected by the trauma during the natural disaster had higher rates of PTSD. This was something that differed from the other groups of chronically ill. After further investigation, she found an explanation in the patients' healthcare situation:
"Yet compared with people with other chronic diseases, CFS patients, even those who hadn't lived through the trauma of a hurricane, had notably higher PTSD rates, she found. Digging deeper, she found that CFS patients had actually been distressed by their medical experiences. A common theme in the trauma was an exposure to a health-care situation that was demoralizing and demeaning, she says."
Dr. Nancy Klimas also said in an interview in the Miamy Herald 2009:
"I've had patients who met posttraumatic stress disorder criteria, where their trauma was their interaction with their physician around this illness. They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD."
So, it is a long known fact that people with ME/CFS are at risk of developing PTSD related to community support systems. I have not found any specific studies on ME/CFS and healthcare triggered PTSD. However, right now there is an important survey study in progress, designed to investigate secondary mental illness in people with ME/CFS linked to external factors, such as how healthcare personnel treat their patients. It is web based and open to everyone with ME/CFS to join.
I want you to have following definition and explanation of trauma and traumatic stress in mind while continuing reading:
"Trauma is an extremely stressful event/situation that can not be circumvented or managed by the individual's available resources."
"When confronted with a kind of stress that is so sudden, unexpected and catastrophic that it can not be handled with ordinary coping mechanism, you will be left with feelings of intense fear and powerlessness. You can do nothing about it and it is impossible to put it aside. This is called traumatic stress."
Please also take this text about complex PTSD triggered by repeated trauma that last for a long time into consideration:
"Many traumatic events (e.g. car accidents, natural disasters, etc.) are of time-limited duration. However, in some cases people experience chronic trauma that continues or repeats for months or years at a time. The current PTSD diagnosis often does not fully capture the severe psychological harm that occurs with prolonged, repeated trauma."
In 2007, the Swedish National Association for ME patients - RME - made a survey among its members about how they experience life with ME/CFS and the relationship to healthcare and community support systems.
The report stresses the fact that this is a disease with seriously debilitating symptoms, that US health authority CDC compare with those of patients with MS, AIDS and cancer in a late stage. In addition to severe debilitating symptoms, one third of the patients in the study said that their mental health deteriorated due to poor treatment from health care professionals. One-fifth say the same regarding the Insurance Agency (Försäkringskassan).
Theoretically speaking, the situation of people with ME/CFS should be improved since 2007, but what the survey reveals are all too familiar to me for it to be ignored.
There is a lot in the results of the investigation that can explain why ME/CFS patients contact with healthcare and the Insurance Agency impair their mental health:
1. Denial of the diagnosis:
"Just over a third (35%) has been told by doctors that the disease does not exist. Of these, 84% already were diagnosed with ME/CFS."
Another survey from 2015 among ME/CFS sufferers in northern Sweden, shows that 4/10 had been ill for at least five years before receiving a diagnosis, 1/10 had been sick for 15 years or more. Only 16% were diagnosed within a year of the onset. The quote above shows that a correct diagnose is not a guarantee for proper treatment of healthcare. If a physician, for example, denies the existence of the disease it has implications for the treatment provided and how patients are treated. The statements that follow can therefore include both patients with and without properly set diagnosis.
2. Demoralizing treatment:
"38% have been met by derogatory comments in contact with healthcare. Some examples are "whining bitches", "you're fantasizing", "you sponge on our tax money ", "I do not want more ME patients", "I have heard there will open up a clinic for hypochondriac", "All people have a little fever every now and then", "Snatch up", "ME is curable if you are running in the woods 10 kilometres three times a week", "Want to be healthy and you will become it". More than half (52%) have been told that the symptoms are psychosomatic. As many as a quarter has been considered a hypochondriac."
I recognize it. The tone. The contempt. The attitude. From the doctor who wanted to send me off to a boot camp to trigger my body to start - to the doctor who said that everything is just about me getting over the threshold. Wrinkled her nose, as if I smell bad. Ignorance. The unwillingness to even talk about ME/CFS, and much less document the conversation. I have received this treatment in relation to both my fatigue and pain - but never so clearly as when I raised ME/CFS as a topic in the conversation.
3. Incorrect treatment or no-treatment at all:
"More than a half (53%) has several times been treated as depressed, though they are not. Antidepressants is also the treatment that made most patients worse or had no effect at all. 62% say that their doctor had no knowledge about the increased sensitivity of medication that a lot of ME/CFS patients experiences. Many patients have been encouraged to increase exercise, which can be directly harmful to those with ME/CFS."
With a diagnosis follows treatment guidelines. Guidelines that are specific in that particular disease. If you get an incorrect diagnose it will automatically lead to malpractice. You will not only be exposed to a treatment that will give you nothing - it also means that the disease never diagnosed is completely untreated and therefore at risk to deteriorate. But there is a much higher risk that the improper treatment leads to deterioration. When doctors deny that ME/CFS exists, recommend treatment based on incorrectly established diagnosis or denying proper treatment due to lack of knowledge - it is not only a serious risk of deterioration of the disease but also a risk of patients developing secondary mental illness.
4. Incorrect assessments:
"A fifth has been declared being able of working full-time by the Insurance Agency, although they are not."
A person with ME/CFS should avoid overload because there is a serious risk of a permanent deterioration of the disease. Being forced to work without the ability to do it is like being forced off a cliff. You are stuck in a situation where you know you will be damaged but still have to continue it with your eyes wide open.
When I analyse my own experience, of what probably is ME/CFS, and my experiences of the system, in light of the definition of traumatic stress, Dr. Klimas research and RMEs survey - I see that there are things both in the disease itself and in the sick persons relation to the system, that can be counted to traumatic stressors.
Many factors are traumatic in themselves:
- The change from being an active, independent and fully functioning person to be severely functionally impaired, limited and depending on others.
- To experience dramatic worsening of symptoms (PEM) due to basic activities of daily living or things that are considered to be a part of standard healthcare/dental care
The combination of seriously debilitating symptoms - including post-exertional malaise (PEM) that can be triggered by both physical, cognitive and emotional overload - and the amount of people that are mistreated in relation to the system increase the risk for trauma:
- To repeatedly seek help due to a difficult situation in hope of getting a correct diagnosis, and then despite the diagnosis be treated as the disease does not exist
- That neither the severe disability or the increasing symptoms recognized by health care despite the functional level of those affected can be compared to advanced cancer
- To be questioned, reduced and neglected repeated times, while your possibilities to live your life are extremely limited due to severe symptoms
- Being forced into care and rehabilitation that is incorrect - or at an inappropriate level - with temporary, long term or permanent deterioration as a consequence, without getting understanding of how it affects your daily life
It is a fact that there is an increased risk of PTSD if you are living under severe stress, if your life is unpredictable, if you are tormented and persecuted, for example by bullying or if you feel betrayed and deceived. The risk increases if you are in a social environment giving rise to feelings of shame and guilt, self-loathing and stigmatization. The patients in the survey study made by the Swedish National Association for ME patients (RME) with this kind of experiences thus are at risk for developing PTSD.
It is also well known that both PTSD and severe chronic illness increases the risk of suicide. A recent study shows that patients with ME/CFS have a significant risk of premature death, the three main causes of premature death are suicide, cancer and cardiovascular diseases.
In Sweden, about 40 000 people are ill in ME/CFS - men, women and children - and most of them lack a correct diagnosis. ME/CFS is a neurological disease and biomedical research shows abnormalities in the nervous, immune and endocrine systems, but in the current situation there is no cure. Although the disease is more common than both MS and Parkinson there is a great lack of specialist clinics in most counties and the knowledge in the rest of the healthcare system is very low.
It is not at all reasonable that patients have their disease deteriorated due to flaws in the system and that some in addition develops secondary mental health problems such as PTSD, and at worst commit suicide!
But the truth is that every one of the 40,000 sick are at risk as long as nothing is done to change the situation.
A little about me. Sick for almost a decade and waiting for an investigation in a ME/CFS clinic - one of the three present in Sweden. Mostly homebound and couch/bed bound. Married, parent and also Occupational Therapist (on sick leave). This blogpost is earlier published in Swedish, in this version you will find a lot of links to other posts from my blog, for example about my own experience on this topic. Unfortunately they are all in Swedish.