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False Health Beliefs

False Health Beliefs

Content: This post mentions death and can be triggering for people with emetophobia

 

A couple of months ago, a dream almost came true. I woke up one morning, and to my surprise my legs were strong enough to walk me to the bathroom without crutches. I was even strong enough to not lean against the walls for support. Even though I was a little dizzy and nauseated after I had my breakfast, it wasn’t as bad as it usually is.

The day continued following this pattern, my usual symptoms were there but less intense than on an average day. Some of them, like nausea, dizziness, pain, brain fog and fever, were mild to the point were I assumed that I was just experiencing what all people feel like in a regular day. On a rational level I knew that this assumption was wrong, because a lot of healthy people don’t feel like they have a fever and a flu every day, but in my excitement to feel less awful than what I’m used to I refused to recognize that thought.

Happy as I was, I started thinking that something inexplicable but amazing had just happened. I was getting well now, my body had miraculously healed itself. Maybe I was just ill because of my own thoughts, like some people had tried to convince me. I desperately wanted to get healthy and recover from this horrible disease and in that moment, where some of my main symptoms were suddenly losing in strength, some old voices started chanting in my head. I could hear the voices of doctors and other healthcare professionals telling me that the symptoms will be alleviated or even disappear if I just challenge them. I heard the echo of all the so-called researchers and other people who have built their careers on promoting the biopsychosocial understanding of my disease, where the idea of “false illness beliefs” is central.

In that moment, it didn’t matter to me that I knew that the PACE trial and other similar studies are flawed to the point of scientific misconduct and cheating. Neither could I parse the fact that biomedical studies are telling us that the false illness beliefs theory isn’t true. I was even prepared to ignore the fact that I have tried gradually increased physiotherapy and that it made me more severely ill and disabled. All these statements from people who have been convinced that my symptoms would go away if I just challenged them were echoing louder and louder inside me, and I couldn’t resist the impulse to be a little bit more active than I usually were.

I truly thought that now, this time, increasing my activity level a little will turn out great. After all, it wasn’t a big raise in activity level, just a small one. Convinced that magic suddenly exists, I was thrilled.

The following day, I woke up with a high fever and my heart jumping around. My pulse and blood pressure monitor yelled at me about irregular heartbeats, I could hardly talk and my partner had to take me to the bathroom in my wheelchair. The whole day was a struggle to not throw up, since I easily get dehydrated and faint if I start doing so. I was in full-blown Post-Exertional Malaise, and my legs couldn’t carry me. My body had checked out. My brain had checked out.

Inside me, the echo saying that I would get well if I only challenged my symptoms persisted. The contrast between the echo and reality was brutal and I felt like a big failure. Like I had been fooled and betrayed by healthcare, myself and my body.

It has been more than two months since this happened, and I’m still not nearly recovered enough to uphold the activity level I had before my attempt to increase it. All previous times where I have overexerted myself like this and not recovered within two months have meant that I’ve never recovered to the level I had before the overexertion. I fear that it will be same this time. I fear that I pushed myself one step further down in this hell called ME.

However, the echo inside me is still there. I’m a patient at the most prominent ME-clinic in Sweden, and all the people working there have deep insight in what science says about ME. They are opposing the idea that I could exert myself well from this disease. Despite that, and despite my knowledge about how flawed the biopsychosocial model’s understanding of ME is, the old voices still own me. Sometimes I fear that the voices of the biopsychosocial school will end up killing me.

 


This post is based on the post Falska friskhetstankar. While reading, please keep in mind that I’m not a professional translator and that I have a quite severe case of ME.

More Healthcare or More Control?

This post is a translated version of the post Vård eller kontroll?  I’m not a professional translator and it’s not flawless, so please feel free to post a question if something is unclear.

 

During the last couple of months I’ve read several statements from healthcare professionals about how the field of assessments relating to social insurances needs to change. For instance, a doctor claims that there’s a need for more assessments of working capability and another doctor claims that we need a totally different process with working capability assessments done at the claimants workplace (both of the linked articles are in Swedish). The common denominator of the statements concerned in this post is healthcare professionals advocating for more governmental control of ill and disabled people.

Because even though these assessments are done by healthcare professionals, they are still actions in the interest of governmental control. These are actions whose purposes aren’t to give healthcare but instead to decide if people really have as limited working capability as they and their treating healthcare professionals claim. In Sweden today, the government is trying to deny ill and disabled people the insurance benefits we are entitled through by law, through directions to the Social Insurance Agency and politically decided goals about how many people are aloud to not have working capability. In this reality, healthcare professionals have to keep the distinction between different kinds of assessments in mind. Is the purpose of an assesment to give healthcare or is it done because social insurance agencies are demanding it?

The difference between these assessments matters because the reality for people with severe illnesses is that there’s not always room for both. There are people who due to diseases and disabilities can’t do both without a severe worsening of our conditions, because assessments are simply way too demanding. People have to say no to actual healthcare that could slow down the progression of their diseases and relieve symptoms, because going through insurance-related assessments requires all the capacity they have. Others choose to take a step back from the mess that the Social Insurance Agency is creating and give up their right to financial support. Instead, they are supported by a partner in order to protect themselves from the worsening of their condition that the assessments and so called “rehabilitation” that their social insurance agency demand would lead to. Because, the insurance industry may call it rehabilitation but in reality, it’s about finding a way to deny claimants benefits.

The most important question isn’t which profession, process or institution that’s the most suitable one to assess working capability. The question is if it’s reasonable to increase the control of ill and disabled people, when we’re in a situation where for instance chronically ill people don’t even get the healthcare that we need. Healthcare professionals need to take a stance: Is your primary task to give healthcare or to help the government to demolish social insurances?

Healthcare Violence

Recently, I have published two posts in Swedish about a phenomenon I call healthcare violence. I want to share my thoughts on this with all my fellow chronically ill and disabled people, not only those who understand Swedish, and therefore I have written a summary in English. Please be patient with typos, spelling misstakes and incorrect grammar. The original posts can be found here and here.

Healthcare violence is a term that I use to describe when treatments, examinations or assessments harm patients, but the harm is not acknowledged and therefore often repeated. For instance, a patient is harmed by a treatment but the injury is not documented in the patient’s medical record and healthcare professionals act like it did not happen. The core difference between a medical injury and healthcare  violence is how healthcare professionals take – or refuse to take – responsibility. When for instance a nurse or a doctor take action to prevent the harm from being repeated, both to the individual patient who suffered the injury and to other patients who potentially could end up being harmed in similar circumstances, it is not violence, even though the consequences can be very severe. Instead, healthcare violence occurs when harm is inflicted on a patient but healthcare professionals refrain from stopping it.

I choose the term “violence” to highlight that the harm is a consequence of healthcare professionals abusing their power. For instance, by not documenting negative outcomes of a treatment, patients risk being forced or pressured to go through the same treatment again in the future, ending up even more harmed. From many discussions with other people with the disease ME (myalgic encephalomyelitis), I have learned that I am not the only one with this experience. In fact, it is a sadly common story. Some of us have been incorrectly diagnosed with depression or exhaustion syndrome (burnout) and therefore been talked into trying cognitive behavioural therapy or physiotherapy. Some of us have been correctly diagnosed with ME but being talked into the same treatments anyway, despite a lack of scientific proof for its suitability. When our symptoms get worse or new symptoms occur and we end up permanently injured by the treatments, healthcare professionals do not document it. Later on, when we see a new doctor, or when we are being assessed by our social insurance agency, they suggest the same treatment again. Since there is no documentation of the worsening of our condition the last time we tried, we are more or less forced to undergo it again. If we don’t, we risk not getting any other medical help and/or losing the financial support that is supposed to be provided by insurance.

There are more examples of healthcare violence. As stated above, the core is that harm is being inflicted to a patient because healthcare professionals refrain from taking action to stop it. Sometimes it happens because patients’ reports of worsening of symptoms are ignored, sometimes it happens because healthcare professionals lack knowledge about a disease or condition and instead of reading up on the disease or condition, they give patients a inappropriate treatment based on prejudices.

As a patient with ME (and a couple of conditions that make my healthcare situation complicated), I am one of all the people with the awful experience of being harmed by healthcare. By calling this phenomenon violence, I wish to highlight the power dynamics operating. It is an inconvenient fact but it is still a fact: Healthcare professionals are subjecting us to violence by causing us harm through the abuse of power.