If you haven’t seen already, Amy has kicked off the Outside Looking In event by publishing her Partner’s answers to the questions with regards to Amy’s conditions – so go check it out by clicking here! I am also following in her footsteps and am happy to present my wonderful Partner, Sam and his answers to the questions about my illness. I hope you enjoy!
I am currently a student at the University of Sunderland studying Mechanical engineering. I am the proud owner of far to many cars and enjoy working on them in my free time. If I’m not at University or working on my cars however, then I’m most probably working as a private hire croupier (casino dealer) at events such as weddings or birthdays. I met Jodie when we were 11 years old and we’ve basically been joined at the hip since them…anyone know a good surgeon?
What is your relationship with the individual who suffers with a chronic illness/es?
I’m Jodie’s Boyfriend, better half, partner in crime (you get the picture). We were best friends from first meeting at the age of 11, dated as kids (aka BBF’s who held hands), officially together from about the age of 17.
Did you know them before or after they were diagnosed?
Yes, she got diagnosed if I’m right when she was 15/16, or that’s when it all started anyway. We were close from 11 and always there for each other so I was very much involved in this with her.
In your opinion, what changed in your relationship after the diagnosis / as the condition progressed?
Nothing at all. Not my feelings, or our relationship, the way we act together. Nothing has changed. I mean maybe, I suppose but for the past 6 years of her diagnosis and our relationship we’ve gone through it together, grown with it together and developed around it together. So maybe things have changed over time, but nothing important. Not my feelings nor our relationship.
The only way her diagnosis affects our relationship is that we sometimes have to think a bit more about plans before making them. For example checking the weather just in case it’s going to be wet or damp therefore affecting her ability to partake in certain things. Other than that we have the odd tiff about it, but half the time it’s just because she is in pain or frustrated by her illness that she angry about it and not angry at me.
Have you been able to support them with their condition?
- If yes, in what way?
I help her in every way I can, physically, mentally, emotionally. I’m always there for hugs, hot water bottle runs, a shoulder to cry on or carrying her from one room to another.
- If no, please explain why or how that makes you feel.
Sometimes if we are both living apart due to work & University I cannot physically be there for her which is awful, especially if I know she is struggling. Other than that, the obvious one of I cannot fix her which is frustrating most of the time.
Do you find anything about their condition frustrating when you are together?
Ah I don’t like that word – frustrated. I don’t get frustrated about her conditions. The only thing we both have to remember and consider is the weather and planning ahead/around it. Also just being realistic about her abilities, we both love to try new things and are very adventurous but we’ve got to be realistic with regards to how much can she handle without doing too much damage or leaving her crippled for the next week.
What do you find difficult to understand about their condition?
Like I said above, the weather. It’s sometimes difficult to understand how different climates affect her condition. Too hot, too cold, too wet, too humid. All play a huge part in her abilities and affect her differently which sometimes seems strange, I mean I used to think hot weather was great for her condition, but not all the time.
Have you ever had a question you did not feel able to ask them about their condition? If so, what was it?
Not really, I was lucky to have been going through the diagnosis along side Jodie, so we learned everything together and asked all our questions throughout her diagnosis. We are very open about everything anyway and I don’t feel like I wouldn’t be able to ask her anything.. apart from sharing food… never ask to share her food!
Had you heard about their conditions before meeting them / them being diagnosed?
Yes, I would have probably been one of those people who said “I didn’t realise it affected young people” but lucky know better than that now.
What has their condition taught you about life with a chronic illness?
It definitely affects more people than just the person diagnosed. I never really thought about it before her conditions started, I was naive in the sense that I just thought that it would affect them and that’s it. But it is very much a team effort in the sense that one person is diagnosed with the conditions, but all of the loved ones help with the uphill battle from there.
What main piece of advice would you give to someone in your position?
The most obvious advise in the world – help as much as you can and always try your best. Sometimes that’s hard because helping at times can literally be just doing nothing but if that’s what they need then do it. I know it may seem like you’re not helping but believe me, you are. The other piece of advice is not so obvious but very important – allow for some independence. Yes you want to help, but as much as they will love you for that, they don’t want to feel completely helpless, so take a step back from time to time.
- Tomorrow Amy over at Living with ME will be posting MY Confessions of a Spoonie so make sure to go check out her page!
- NEXT WEEK is the official start-up of these wonderful events! That means if you’ve gotten involved so far, we will be publishing your work so keep your eyes peeled!
- Again head over to Amy’s page and check out what her boyfriend has said in his Outside Looking In answers, click here.
Don’t forget if you want to take part in either of the events you still can!
Blog you later »