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.