Looking forward to psychiatry? Yes it’s possible.

Being the mask of Ehlers-Danlos Type III

Behind the mask of Ehlers-Danlos Type III

A few weeks ago, I came across a link on Facebook. I was actually relieved by its content because I had been thinking there had to be a link between depression or anxiety and Ehlers-Danlos Type III for some time. The article is called Brain structure and joint hypermobility: relevance to the expression of psychiatric symptoms and can be accessed here.

If you haven’t already read my post on our nightmare from psychiatry, you can check it out here “When psychiatry does more harm than good“.

Last month, my daughter (who suffers from EDS Type III) was seen by someone in the medical field who insisted on assessing her for suicide risk. Of course, we both knew (my daughter and I) that the results would be positive. I mean, imagine if you were 9 or 10 years of age and you felt like you were too tired to do anything (including sitting in the sun because you have a “broken thermostat” – meaning you overheat). And then, over the years your symptoms only get worse – the fatigue is unbearable (you can only sleep) and the pain is at times excruciating (your dog hits you under the chin with his head and the pain is so significant you lose your breath). On a bad day you can’t help but sleep for about 20 hours. You have no friends and you haven’t attended school for over 7 years. At the same time, doctors tell you you are oppositional and that you are tired because you do not exercise. Then when you take the suicide risk assessment questionnaire, your results are positive. Surprised? I don’t think so.

For my daughter, it is not about ending her life; this is about getting a life that she can’t seem to find the road to because there are too many obstacles.

The person who made her write the assessment questionnaire also told us that the psychiatric help she was receiving here was not suitable to her needs. I have to say I disagree and I’m sure my daughter feels the same way.

Every second month (or depending on her needs) my daughter and I see a local psychiatrist who is very  open to the fact that she is burdened by a condition that is misunderstood by most health practitioners (in Canada at least) and at the same time very “taxing” on her mental health status. Like many other health professionals, he knows very little about Ehlers-Danlos – and he admits it. But he listens and he doesn’t judge. For the first time, a psychiatrist walks alongside my daughter and sees more than just a mental issue. Every time we come out of his office, we feel amazing and hopeful. To the contrary of what is stated in my previous post about the danger of psychiatric assessments, this doctor actually tells my daughter that it’s very good she has my full support (rather than me causing her to be dysfunctional) and this week, he even told her that she obviously “absorbs” a lot of valuable knowledge from me and that for now it represents an important part of her culture and education. This week’s recommendation was that – in light of the fact that she is learning from me – she should take one day at a time, keep focusing on how to manage her illness to start feeling a little better, and to not worry about school until she feels ready. At home, we discuss physics, writing, and culture on a regular basis. My daughter’s cognitive scores are in the range of the 90th centile and things need to kept in perspective – she will do well if she can just start managing her symptoms rather than pushing them under the carpet as she has been asked to do.

As for the completed suicide risk assessment questionnaire, the results are considered passive and relevant to the difficulties my daughter is facing on a daily basis.

I would wish for anyone with anxiety or an illness affecting their mental health to meet a psychiatrist or caregiver with as much compassion as that of my daughter’s. Just like anything else, we must keep looking for the best possible treatment out there rather than putting up with something destructive.

When psychiatry does more harm than good

My daughter at 9

My daughter when she was 9 – This is a child with Ehlers-Danlos type III.

When my husband of 10 years left, our world was turned upside down.

I was trying hard to keep busy to make my days easier and since my youngest daughter’s teacher needed help in the classroom, I offered to assist with cleaning and class projects for a few days.

At the time, my daughters had just turned 6 and 8 and the youngest was struggling with health issues. What started with back pain and generalized fatigue, quickly progressed to an extent where she missed about two months of school in a row that year.

By the time she was 9, she was getting even more tired and struggled with simple daily activities. She gradually started skipping her favorite sporting activities, although she excelled at everything and was very competitive. Finally, when she turned ten, she broke down.

One evening, as I was tucking her in, she told me she couldn’t keep up with life, and added that she wanted to die. I was shocked and confused. This little girl who had always been very reasonable and productive was suddenly out of options it seemed. I was totally frightened as I knew she would never say such a thing to manipulate.

Although I knew she was awfully tired, I pushed the thought of a possible illness slightly to the side and called the teachers, her friends, her father and all the people I could think of that could perhaps shed some light on something I may not have known that may have been going on in her life. When no answer could be found, I took her to a general practitioner who took her very seriously and referred her to her pediatrician.

And that’s how we eventually ended up in psychiatry. It all went downhill from there, and that may also be where helping the kindergarten teacher may have changed everything.

The first psychiatric assessment doesn’t mention my daughter’s physical fatigue and loss of interest. The fatigue noted in the report is related to her anxiety.

Among other things, the report states that “mum made sure that she volunteered in class most available to” her daughter. What??? And then “We have discussed with mum and “daughter”  the importance of her continuing to attend school  instead of gaining access to mum through the sick roll or through uttering suicidal threats.” WOW.

By the time my daughter was 10, she had attempted her first suicide attempt. By the time she was 12 she had overdosed to an extent where the ER doctor told me she probably wouldn’t make it.

Clearly, the “assumptions” included in my daughter’s psychiatric evaluations -because there were many and they kept getting worse from one to the next – were gradually weaved into a solid piece of false pretensions that in the end had a significant and detrimental effect on her medical care. 

In September of 2010, my daughter was diagnosed with hypothyroidism – which by the way is known to contribute to fatigue, anxiety, and depression.

In the weeks that followed, further testing confirmed polycystic ovary syndrome – which is also known to include symptoms of anxiety and depression, as well as suicide attempts.

The pressure point test for fibromyalgia is a positive score of 18 over 18. I’m sure these patients also suffer from depression and anxiety.

She suffers from symptoms of POTS (postural tachycardia symptoms) and sometimes, her blood pressure is very low.

Ehlers-Danlos type III, a connective tissue disorder, was suspected when she was a young child but the diagnosis was never made. She obviously has the disorder and it is now part of her medical file  (very easy to tell because of joint elasticity and other clear signs). Many of these patients are also known to suffer from anxiety.

She is now bed ridden on most days, has not attended school in 6 years for the most part. On a good day, she can walk a distance of 10 to 20 meters.

We are now waiting for a variety of medical assessments including genetics, cardiology, endocrinology.

And all of this started with the assumption that she was trying to manipulate the overall situation to get my attention. I am sure this is just one tiny example of when psychiatry does more harm than good.

In a desperate moment

My instinct takes me to the family room where she is sitting. Her red face has a voice of its own. The one thing I am dreading the most sends my heart beating out of my chest and a rush of heat to my face. My 12-year-old daughter has just swallowed a large number of pills. Her depressive state has been apparent for over two years. Feeling weaker by the day, she is no longer able to get on with her life.  Burdened by extreme anxiety and fatigue, this is another attempt to end her suffering. The system, it appears, doesn’t know what to do. The lights are turned off.

It takes me seconds to drag her out into the cold air of the winter without a coat. My memory skips over to the line-up at the emergency room. Ironically, the parents are standing calmly with their children and that bothers me – my heart is racing.  As I rush to the front of the line, feeling like I am going to explode, the young woman at the triage ignores our presence. It doesn’t matter that I am begging for help and that the man standing before her with his child moves aside in response to my agony. Finally, without looking up, the woman tells me to wait as some people have arrived before us and I reply: “But you have to understand, there is a window…”  The situation is a nightmare. Seconds later, I am yelling out of despair, feeling totally helpless. My body is fighting  to jump out of its own skin and I am literally going out of my mind. I walk to a chair in the adjoining corridor, leaving my daughter standing there on her own among the quiet parents and their children. Sitting, I hold my head in my hands and weep out loud like a little child with a badly scratched knee.  A caring stranger puts his hand on my shoulder and, standing in a demeanor that feels like that of the husband I do not have, tells me not to worry, that she is going to be OK.

The words cause me to stand and gather myself. My daughter is out of sight. I ask where my child is but the young woman brushes me off again, mumbling that someone has taken her.  As I finally enter the treatment room, the scene before me is paralyzing. With the innate and accurate perspective of everything that transpires from my progeny,  I see her lying there in a little yellow gown, her porcelain skin more transparent than ever, her big blue eyes empty of her own self, and her long dark hair making her tiny body appear even smaller. My child is void of expression – like she has to keep quiet, feeling misunderstood, unhappy, and threatened by the system. She holds back from crying with every painful intervention – like she deserves to hurt. The ER doctor asks me how many pills and my answer causes her to reply “that is exaggerated”.  But once the truth is exposed, she tells me that if my daughter makes it, she will most likely be on dialysis for the rest of her life. Her words are harsh, she doesn’t understand. Void of apology, she goes on pretending she never said the cruel words. Now, I am on the outside, standing as a stranger, secretly hoping for God to take my sweet child and release her from the pain that no one is able to manage. Still she lies there, fighting, her eyes watery with circles growing dark underneath, her insides crawling out of her from the effect of the overdose, her little fingernails black from the charcoal and still I am standing on the outside, watching like a stranger. The loads of linen on the large shelves are continuously being replaced, without a word employees slowly enter, exit, and repeat the task. No one says anything. Only the two-hour window will tell.

When the deadline is reached, my daughter’s time isn’t up. It feels like a miracle. but it still hurts. The scars serve as a reminder that any child’s desperate call for help should never be taken lightly. The lights need to be kept on at all times.