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.