In our local area there are awards for 'Local Heroes'. The awards are run through the local newspaper, with nominations coming from the readers. With my needs having changed so much in the past year, I have noticed such a positive change in my son. I looked through the categories for the awards, thinking of the volunteers who run the local girl guiding groups, the care farm worker, the sports coach who also has fibromyalgia and gives away so many free sessions to local children, but there was a young person's category that stated it includes young carers.
Personally I think they deserve a category of their own, but all young people, for whatever reason they have been nominated are lumped into one category. Anyone nominated and then chosen by the paper, has an interview and photographs if they desire, then a couple of months later a group of representatives from the community will meet to decide on shortlists.
I nominated my son without telling anyone. I sent in an email detailing all of the caring work he has been doing here, unseen by anyone, though never unnoticed by me. It has brought out such a positive side in him and given him a sense of responsibility. His pathological demand avoidance may bring him great anxiety and the need to be in control, which can present as a huge difficulty in most areas of life, but in this situation it is a real strength. He has managed to push through some of his own difficulties to really be there for me when I have needed it.
The guilt that I feel as a result of him and my family having to help me out with anything is huge. I really struggle with asking them for help with anything, but when it comes to asking a child to take me to the toilet, or do my bra up for me, I find it incredibly tough. They are always happy to help and never complain, especially J, but these illnesses are really hard going. The constant lack of energy, pain and fatigue, combined with menstrual issues as and when and irritable bowel symptoms and pains and allergies is so rough to manage.
As people are nominated and the articles written, they get published on the newspaper website as well as in print. This such a boost for those who have been nominated, J was over the moon when I told him about it. He insisted we buy three copies of the paper, even though he had already read the online article. I think the fact that someone from outside of the immediate family was seeing his actions as above and beyond made the difference.
Then the trolls started. It got so personal that I reported their posts to the newspaper, emailed the original reporter, then realised he might be off for the day so forwarded said email to the chief editor and got commenting turned off for the article online. People were being terrible on there and it mde me and my friends so angry and hurt for a child who has so many daily struggles and yet is being praised for such a positive change.
Comments were being made about me and my illnesses, along the lines of me making them up to claim benefits, the illnesses not being real, the illnesses being very convenient and comparing me to others with similar illnesses who can still life their lives to the full. People were commenting on my children's names, on their autism, poking fun of pathological demand avoidance and claiming their diagnoses were all false.
It got to the point where I thought I was going to have to threaten legal action for defamation, because if my son had seen any of it he would have been distraught. Thankfully the paper acted on my email and reports and took swift action.
I am in agreement of free speech and the right to have and voice an opinion, but when it is personal and based on fiction then that is a different matter entirely. As an adult I know trolls are sad individuals who take great pleasure in upsetting people from behind a screen, which is why I didn't bother to comment back to any of them, but it still upset me. Imagine reading those types of comments as a young teenager? Imagine the hurt that could be caused then.
I don't know what it is with society that makes people think they have a God given right to comment on other people's lives in that way. Even today we had a lady on the street come and approach my husband, saying someone in her family has a similar illness and is coping ok. I am waiting for someone to approach me personally, but of course that hasn't happened yet.
I have had fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, adenomyosis, polycystic ovaries, allergies, intolerances, chronic pain, and intermittent mental health issues with depression and anxiety for years and years. They have not suddenly appeared from nowhere. The one thing that has changed is that they have gotten a lot worse, to the oint they now affect every part of my daily life. When I move from sitting to standing, or lying to sitting, my pulse races and I feel lightheaded and dizzy. Paramedics have commented on it as it sets their heart rate alarms off being so fast. When I put any pressure on my limbs they tremor uncontrollably. This in turn means I cannot walk without falling and hurting myself. I need help to get onto my own bed. My thinking is not clear any more. I often forget the word I need, or say the wrong word. I can see what I want to say but can't get it out, or confuse it on the way out so it doesn't make sense, such as asking my husband for an eat when I need a fork. An MRI has shown degeneration in my spine already, I have had many invasive medical procedures to find the causes of my symptoms and have been having these for the last 13years.
My three children are all beautiful and amazing young people. Our world is sadly not geared towards people who don't fit into the round hole created by politics and society. My children are all square pegs. They need assessments and diagnoses to help people understand why they can't fit into their round holes, to stop others causing them damage by repeatedly trying to force them to fit in. This has been a long long battle and has also been over the last 9 years.
So, when people who are ignorant to the illnesses/conditions/disabilities we are living with make personal unsubstantiated comments like they have done on this article, I wish I could invite them into my life for a day, swap places with them for a day to make them understand. But the reality of our society is that ignorant people like them continue to get away with upsetting others with their outrageous, uneducated remarks and taunts because they know how to fit into the round hole when they need to.
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