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Don't Pathologize the Emotional Pain Caused by My Chronic Illness

When most people go to see a doctor, they hope they can put trust in them — trust in their training, trust in a diagnosis and hopefully their knowledge in being able to treat that problem. However, what happens if you are continually invalidated by the medical profession, not believed or turned away? Or what happens when someone with a chronic physical illness is actually very healthy “mentally”? Does a doctor have a right to label you “mentally ill” because your physical health is “too complex” for them to handle? A health care consultation can last just a matter of minutes, and they don’t see how you live in the real world.

Recently, I’ve started to question what exactly everyone thinks “mental health” is and I’ve realized how confused doctors, and society in general, are regarding the concepts of “health” versus “wellness;” of “mental health” versus “mental wellness” versus “mental illness.”

Recently I’ve started to question how I can make “them” (the doctors and certified mental health technicians, or CMHT) realize? How can I make them listen? Formal complaints about my misdiagnosis just magically “disappear” or get turned round on me because apparently, I am “mentally ill.”

I’ve started to question whose right it is anyway to label people with chronic physical illness as “mentally ill” when their everyday general existence is fundamentally disproportionately skewed compared to the “fit and healthy” amongst us.

Often the words “health” and “wellness” are used interchangeably, and there seems to be a distinct lack of knowledge of the critical differences between these two terms. The World Health Organization (WHO) defines health as, “… a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” They define wellness as, “…the optimal state of health of individuals and groups.” Wellness can be conceptualized in terms of the holism of external, internal and the symbolic layer of human experience. This is in terms of physical, emotional, intellectual, spiritual, social, environmental and occupational wellness.

There is also distinct misuse between use of the terms “mental health” “mental wellness” and “mental illness.” Mental health isn’t something you do or don’t have! It’s a continuum and relates to a person’s condition with regard to their psychological and emotional well-being; how they adjusts to society and the ordinary stresses of everyday life. If you take factors such as these to examine how I live my everyday life these days, then you could well conclude what a well-balanced, resilient and mentally healthy individual I am… but according to the doctors I have a “severe mental illness.”

I am caught in a dichotomous power construct between the health care system and myself. And let’s face it I am rather outnumbered! I have taught myself about health and wellness, the human mind and body and can quote things such as the Mental Capacity Act and NICE treatment guidelines better than the “professionals.” However, my knowledge just gets criticized, maybe their doctor “ego” feels humiliated? In reality all I am doing is learning about how to take responsibility for my own health.

You may be thinking why do I still go to see doctors if I feel this way? Because I refuse to accept the daily debilitating procedures I have to perform for my physical health are necessary and I continue to search for doctors with the right knowledge and skills to help me. Meanwhile I am up against my supposed “severe mental illness.”

There is a buzz to “the mind-body” approach, but how can this even matter when the doctors think everything is because you are “mentally ill”?

Earlier this year, I was formally diagnosed with Ehlers-Danlos syndrome after a very long fight. It’s notoriously hard to get this rare genetic connective tissue disorder the recognition it deserves, and medically-induced PTSD from the “medical journey” is common in the EDS community. However, for me, with a diagnosis of EUPD (emotionally unstable personality disorder, most commonly known as borderline personality disorder) I have had a particularly tough time.

I think the NHS is amazing, so please do not think I am criticizing here. What I am saying is that if you are “too complex” the health care system can seem like “survival of the fittest.” It’s almost as if it’s “out of sight, out of mind” and if a doctor tells you that you don’t have a problem you say you have, then they don’t have to treat it or help you. It’s like a conspiracy theory. A system that is meant to exist to help make you better, but only if you have one simple problem. It’s not a system designed for the “too complex,” like myself. I know I am not the only one in the land of chronic illness to not be taken seriously about physical health and just labelled “mentally ill.” I also have a background of childhood trauma which just adds complication.

I have a high ACE score, and it’s likely that early childhood trauma and attachment trauma meant I didn’t learn the ability to self-regulate my nervous system. Later I developed unhealthy coping mechanisms and started self-harming. To my knowledge the professionals have not even considered attachment trauma. Cue a diagnosis of emotionally unstable personality disorder. I am fighting hard to get this removed from my medical notes its clearly a misdiagnosis. Thankfully Complex PTSD is gaining increasing recognition. I also have  obsessive compulsive disorder (OCD) linked to unresolved trauma.

I am now being penalized by the healthcare system because I used to self-harm linked to a traumatic childhood. Apparently, according to so many clinic letters I am “intelligent, despite having a severe mental illness.” Firstly, that is shocking! Doctors should know that mental illness does not discriminate based on intelligence, race, gender, etc. Anyone can become mentally ill. And secondly, if I have a “severe mental illness” — what illness exactly can they legitimately diagnose me with that I meet the diagnostic criteria for? Not my main diagnosis in my medical notes (EUPD!).

These days when unfortunately life feels too much to handle because of my debilitating physical problems, I try to make it clear suicide attempts are purely linked to the physical problems from the EDS and how hard it makes my daily life, but time and time again I get branded “mentally unstable” or “in mental distress.” They are totally missing the point! But of course, my diagnosis means they don’t have to bother helping me with my physical problems and they think they can just label me as “severely mentally ill.”

I admit parts of my daily schedule and tasks aren’t “normal behavior,” more specifically my cleaning rituals and contamination fears. My cleaning rituals mean my flat is tidy, they are time consuming, but I’ve accepted the rituals as part of my daily schedule and my productivity! There are plenty of much worse ways a “mental illness” could manifest than in rituals involved with keeping my flat clean!

I am currently studying doing an MSc, fulfilling my potential. I don’t have loads of friends but its “quality not quantity” and I am so lucky to have the social support I do. I exercise regularly (despite lots of chronic pain issues), I cook everything from scratch due to lots of food intolerances, know about sleep hygiene, these days when I get stressed, I go floating, or use some of my tech wellness gadgets. I have hobbies, leisure activities and interests. I am incredibly resilient, have very stringent self-care routines. I do the very best I can each day whilst coping with very debilitating physical problems that I self-manage, and the NHS cannot help me with. I don’t drink, smoke or take drugs. During the current COVID pandemic I look around me and I see just how well I am thriving in right now, how mentally well I am!

The hospital doctors think I am “crazy” and that means they don’t have to help with my physical problems. The pain team won’t help me because I (supposedly) have “EUPD,” I am no longer under a CMHT and they thought my physical problems are health anxiety and not even real.

The childhood trauma has caused significant problems, but also its lead to very significant strengths. In the past my self-harming coping mechanisms were dysfunctional, but I was doing the best I could to cope at the time. I’ve taught myself different strategies now and can self-regulate my nervous system. The strategies such as mindfulness and breathing exercises so strongly advocated by the CMHT are actually often contraindicated in complex trauma survivors. I am incredibly proud of the strong, resilient, determined person I have fought so hard to become. I actually cope incredibly well every day and to the best of my ability, and the only reason I cope so well with some of the daily challenges I face due to the Ehlers-Danlos syndrome is because my “mental health” is actually so good these days!

I feel like screaming at the next professional who asks me the question, “What help are you getting for your mental health problems?” I am not on any pharmacological treatment for mental illness. They keep saying that “you desperately need help for your mental health problems from the mental health team”… What “problems” do I need help with exactly? Yes, I need help with my continuing suicidality. But the suicidality is due to my physical problems, not my “mental health.” I actually need help with some very life-altering and debilitating physical health problems. If I got help appropriate help with this my suicidality would significantly decrease. But apparently, I am “severely mentally ill,” and I need help from the CMHT. If I was under them, they would just act to re-traumatize me. Do more harm than good. What “help” do I actually need with my “mental health”? I see no benefit of being under CMHT again aside from just to confirm to the doctor’s view of who I am. But I am not that person. Besides, it would take up precious time I need to manage my physical health challenges.

The hospital doctors think I need to be under a mental health team. The local CMHT (bearing in mind I live in a big city) just don’t have the knowledge or expertise. They won’t admit this but in reality, I would need to be referred to a much more knowledgeable and trauma-informed healthcare trust for psychotherapy. I have been through some much trauma; therapy would need to be several times a week for many years. In reality psychological “treatment” could have made me so much worse before I got any better. I am currently well-balanced and coping well.

I see a fantastic lady with many different “hats” who is very well-trained and very skillful in all sorts of things such as craniosacral therapy and somatic experiencing. I have so much faith in the work of leading trauma experts such as Prof. Stephen Porges, Prof. Bessel Van der Kolk and Dr. Peter Levine. But mention them to the CMHT and they don’t even know who you are talking about! I am seeing the benefit of body-based trauma work that rebalances the nervous system after it gets stuck in fight, flight, freeze mode. This doesn’t involve talking, or re-living traumatic memories, but in combination with floating, it is working wonders. I would rather stick with this. But doctors don’t know about things like this and refuse to acknowledge it works.

Trauma is stored in the body. It leads to biochemical changes, leaves a biochemical imprint in the gut for example, puts your nervous system in sympathetic overdrive, even changes our cells at a mitochondrial level and also cause changes in the electrical fields of firing neurons in the brain. Healing trauma needs a holistic body-based approach. Personally I have moved away from the idea of psychological therapies and talking therapies although I know they can work well for some.

I think the functional medicine practitioners have a far better idea through addressing areas such as circadian rhythm and light exposure, Vagus nerve stimulation, water quality, toxin and mould exposure, nutrition, time in nature, radiation exposure, detoxifying.

As human beings we have an innate capacity for our body to self-heal and we can do various things to promote brain neuroplasticity. However, “healing” and finding deeper meaning in things, healing sub-personalities and becoming a better integrated, a more resolved being, clearly goes against “mass consciousness” (of society). As humans we can wake up and become enlightened, learn to know who you are as a person, heal attachment trauma and take a holistic mind-body-spirit approach to health, happiness and serenity. However clearly most doctors are skeptics of this!

Previously I was living in a highly toxic, abusive home. I cannot deny in the past I was “mentally ill.” My childhood trauma caught up with me. I was depressed and anxious. I didn’t know how to self-regulate my nervous system, I turned to self-harming to cope. I couldn’t sleep without medication. It got to the stage where they said if I refused to take lithium that means “you don’t want to get better.” Medication, especially lithium, definitely wasn’t the answer for me. Now I am away from that toxic environment I have made massive progress thanks to my determination, own research and a few rare professionals who are actually good at their job, good at actually helping patients. I have evolved into a very different person. How much of my “disordered personality” label was linked to the control I was under from another person? I was unable to take care of myself in the ways I do now. But even now, I am still being judged as “severely mentally ill” and denied help with my physical health and Ehlers-Danlos syndrome. In any case, this goes against government drives to improve the long-term health of the mentally ill.

They preach about the importance of good sleep, exercise, nutrition and self-care and appropriately managing physical health, but when someone does make as much progress as I have… doctors refuse to acknowledge the reasons why that patient has moved on with their life.

One of my bugbears is “expert opinion” — how the opinion and how a diagnosis of one “expert” gets taken as face value by other “experts.” The CMHT claim “it’s not the diagnosis that’s important and we give patients a diagnosis just to inform treatment pathways,” but they categorically fail to realize the impact diagnosis has on someone’s life, in the real world.

I have a physical problem and am being penalized because of how I used to cope with my childhood trauma and attachment trauma. My daily life is hard, but I am mentally well. And in the best state of mental health I have ever been in. The trauma I’ve been through has led to my strengths and equipped me with “mental wellness.” Not mental illness. I don’t deny I have challenges still, rituals. etc. But I am not mentally ill in the way the medical profession labels me with mental illness.

It seems we live in a world defined by DSM diagnostic criteria and they don’t realize what an impact diagnosis has on the outside real world. So — if I need help for my “mental health” what “help” am I going to get”? Krishnamurti famously said, “It is no measure of health to be well adjusted to a profoundly sick society,” and this is so true! There is a huge dysfunction of mass consciousness (of society), of the human condition. So, whose right is it to decide someone who is as mentally well as I am, but coping with chronic illness, has a “severe mental illness”? There needs to be a paradigm shift in the understanding of “mental health” compared to “mental wellness.”

Photo by Jurica Koletić on Unsplash