Same here. I wonât go in to my long and involved medical history but (with her permission) I will post my daughters story.
So this time 2 years ago my daughter was a ânormalâ ten year old. She enjoyed school, had just finished filming a part in a Real Life Actual Movie, did several hours of dance, acting, and theatre training a week (at her own behest, Iâve never been nearly as driven as my children are). Sheâd play in the garden every chance she got, spending hours on the trampoline both alone, and making up games with her siblings. Honestly I was knackered just watching her.
Then, not long after turning 11 things started to change. She was struggling to keep up with her classes, so we cut them down (only keeping the ones she was adamant to keep attending). She was exhausted by school. She stopped wanting to play outside, saying she was too tired. We tried our best to make sure it wasnât anything at home or school causing it - we made extra sure that we were doing our best to keep her hydrated, that it wasnât sugar crashes causing her tiredness.
Then, when I was trying to wake her up for school one day, she burst into tears. âI just hurt mumâ, she said. That was that then, enough trying to check this ourselves, time to get the gp involved.
What followed was about 14 months of us taking her to the gp (all male) and being told over and over again that she was
*doing too much/not enough
*probably not drinking enough
Wandering uterus syndrome (aka female hysteria) was the definite subtext to all these conversations. Eventually we managed to get her an appt with the one male gp there who actually listened. He sent her for blood tests (he was the third doc to do this, but the only one who checked her vitamin D levels), and put her on a vitamin D suppliment when her levels came back âat risk of ricketsâ low. He told us to keep her on it for a couple of months and that if she wasnât feeling better, then he would refer her.
Now bear in mind please, just how happily active she was to begin with. At this point she couldnât make it all the way up the stairs in one go, and despite the fact that sheâs never been particularly prone to tears, Iâd find her crying at her inability to complete tasks which able-bodied people can accomplish without thought.
Before the couple of months was through we were given very short notice to leave our house (renting is such fun), and we had to move out of the area. As soon as we were settled and registered with a new gp practice I asked my partner (a man) to take her to the gp again. It took a five minute appointment with him presenting our daughters issues to a female gp for her to basically do the Home Alone face and refer her immediately.
Her referral came through and she had her appointment with a female consultant a couple of weeks ago. In that appt I was brought close to tears by the sheer shock of a doc listening to and believing us. She discussed everything with us and referred my daughter on to a whole host of specialists (each one discussed with us and all considered within the sphere of whether she would want *her own* daughter seen by that person).
My daughter left that room with a hypothetical diagnosis, which has since been confirmed. That same consultant rang me that afternoon, asking us both how we felt about daughter trying x medication on a low dose while we wait for the referrals to come through - sheâd taken her lunch break to track down the rheumatologist sheâd referred us to, not wanting my daughter to have to wait another day after being exhausted and in pain so long.
* a psychologist for mental health support because of the huge life change the illness caused, and ongoing support to cope with it
* a physiotherapist to help her gain as much mobility back as is possible for her, and for us both to learn how best to address the physical issues caused by her illness
*rheumatologist for, y'know, rheumatology
*something else I canât remember
The consultant also changed her allergy medicine to one which doesnât cause drowsiness saying that although it might not make much difference, it might make a little and that was worth the effort of writing a prescription and an email to her gp to get it on repeat.
So yeah. Like @thebibliosphere said, thatâs our experience too.
(Again, Iâd just like to assure anybody reading this that it was written with my daughters input, with her consent freely given, and was read through fully (and approved) by her before I hit post)