Apologies for this being so late, I couldn’t post this on Thursday due to having really bad internet, so instead I am going to post both this one and the Confessions of a Spoonie today! This one Mia Wilson will be answering the questions for Outside Looking In.
I’m an 18 year old from South Yorkshire who has grown up with two family members who have auto immune diseases, My mum has Lupus, and I’ve only ever know her with Lupus as she was diagnosed at 17. My brother is a more recent diagnosis with Fibromyalgia and depression. And to add the icing to the cake, at 18, I’ve under investigation for an auto immune disease myself! Life throws a load of rubbish our way, but the to look at life is to enjoy it!
What is your relationship with the individual who suffers with a chronic illness/es?
Both my mum and brother have auto-immune diseases
Did you know them before or after they were diagnosed?
My mum has been ill all of my life but my brother’s diagnosis was in the last 4 years (I am 18 and he is 21).
In your opinion, what changed in your relationship after the diagnosis / as the condition progressed?
Nothing changed with my mother due to me only knowing her with Lupus. My brother and I however is a different story, whilst growing up we were never on the same page, we would always argue and fall out over tiny things (sounds very sibling like but it was beyond ordinary sibling relationship). Following his diagnosis (which is still ongoing), our relationship got closer due to him suffering from depression alongside his illness, I suppose we have naturally become closer.
Have you been able to support them with their condition?
In terms of my brother’s depression, yes, I have been able to go to appointments with him and make sure he is as ok as he can be by talking things through with him.
In terms of both my mother’s lupus and brothers fibromyalgia, I feel very helpless as there is nothing I can do to help other than support them through appointments etc.
Do you find anything about their condition frustrating when you are together?
It is very frustrating that I can’t help them in any way.
What do you find difficult to understand about their condition?
I don’t find anything difficult to understand as I have grown up with help from support groups and Lupus UK in terms of my mum’s condition. And for my brother, when I found out I was old enough to understand the implications of his condition, and having grown up with my mum it made sense to me.
Have you ever had a question you did not feel able to ask them about their condition? If so, what was it?
Had you heard about their conditions before meeting them / them being diagnosed?
Not for my brother No, all I knew was that both me and my brother are at risk due to our mothers condition which she was diagnosed with at 17.
What has their condition taught you about life with a chronic illness?
It’s not fun, and something that needs to be raised awareness of.
What main piece of advice would you give to someone in your position?
Keep strong, you aren’t the victim in the scenario, as harsh as it sounds, you need to make sure you keep level headed for the person in your life who is affected.
Thank you again Mia for taking part with the series, and I hope everyone enjoyed reading it!
- Remember to take a look over on Jodie’s blog for Tuesday’s Confessions of a Spoonie with Laura Chamberlain!
- The NEXT Confessions of a Spoonie will be posted by me, later on today, and Jodie will be posting another one on this coming Tuesday!
- I will be posting the next Outside Looking In on Thursday!
If you would like to get involved, you still can! Just email me at email@example.com and we can get something organised!