For all the parents supporting children with chronic, hard-to-diagnose illnesses.
This may seem like a random post, but today I read an article about a family fined because their child was unable to attend school due to ongoing migraines. It resonated deeply with me and made me realise there are probably many people in this very unique and challenging situation where you child is ill but because they are not severely ill or with a diagnosis people around you think it’s not too bad or nothing at all
For my daughter, she has an ongoing, life-impacting gastrointestinal condition. Thankfully, we were able to conclude it was not life-threatening after about three months. However, due to a lack of real research on childhood stomach issues, the cause of her severe symptoms remains unknown. This has led us down a bewildering and stressful path of experimenting with food, supplements, and consultations with various doctors.
Her low attendance at school impacts her every day. My point in writing this post is not to dwell on my own situation but to highlight the challenges that parents face in circumstances where children have chronic conditions without short-term solutions.
Challenges we've faced:
- Financial Costs: We've incurred significant costs by opting for private healthcare to avoid long waiting times. At times, my child was crying herself to sleep at 2am due to pain. Although we visited the GP and A&E several times, the conclusion (which they seemed to think should allay any worries) was that she wasn’t dying, so she just had to go home.
- Emotional Toll: Supporting a young child through a painful ordeal, where adults can't provide immediate relief, missing out on school and social activities, and having to give up hobbies.
- Lack of Understanding: Friends and family often lack understanding. If you haven’t experienced these issues firsthand, it's easy to think children are exaggerating their symptoms. It feels like the common, quick conclusion is scepticism, and we find ourselves having to prove the legitimacy of her condition rather than having it accepted at face value.
- Educational Challenges: For a while, her absences were treated as truancy or school avoidance. My poor girl has had to cancel her birthday, miss many activities she loves, and spend holidays in bed. This is not about reluctance to go to school. We've even had a review for mental health and stress, which concluded that her issues were not related to these factors. It took a stressful meeting with the headmistress, who finally accepted her consultant’s letter, to resolve some of these misunderstandings.
- Impact on Work and Life: We can hardly plan anything without worrying that everything might have to be cancelled. I’ve had to switch to freelance work, substantially reducing my salary, as we never know whether she can attend school.
This post is meant to explain what it’s like and to say to others going through this: I am so sorry for what you are going through.