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Arthritis through the eyes of my family and friends

Updated: Sep 26, 2020

Hello all, I hope you’re all keeping well!

Quick forward - this post is a little bit different to the ones you’ve read before. As you may have guessed from the title, the majority of it is not by me. I wanted to share the views and opinions of some of my closest friends and family members, so I asked my loved ones if they could write a little bit about how they felt when I was diagnosed and how it has affected our relationship.

First up, Lucy and Emily - friends from Teesside University. We were put in the same housing in first year and then got a house together for second and third year. They have been so amazing, and I have definitely missed our laughs since graduating.

“The first indication I remember of Ali having RA was her swollen ankles after a night out. I helped her limp back to our Uni house, got her into bed with her takeaway and ran to get her some frozen peas. At the time though, we thought she was just a very clumsy drunk and had taken a nasty tumble.

It wasn’t long after that, when the swelling didn’t subside, we realised it was something more! I remember it affecting her driving, leaving her unable to drive home on a weekend. As her friend, I was really worried (I was the worrier of the group anyway).

When she told me her diagnosis, I didn’t really understand what RA was! I didn’t know how to react or what to say, it’s not every day your 21-year-old friend tells you they have arthritis! When I hear the word arthritis I think of older people and creaky joints, not an otherwise seemingly healthy 21-year-old. I was very confused and unaware of what RA was and what it really entailed. Now, I’m much more educated on the condition, and that’s thanks to Ali! Personally, I don’t see Ali any differently since her diagnosis. The only difference I see in my friend is that she’s opened my eyes to yet another thing I was oblivious to!” – Lucy

“When I first found out about Ali’s diagnosis, I didn’t actually know that much about it. But I watched in amazement as Ali changed everything she needed to about her lifestyle.

She didn’t let it get her down or mar her Uni experience and it was always so great how she definitely didn’t let it affect our nights out! I have a distinct memory of Ali on crutches in Spensley’s, dancing on the speakers, purely just living life! So she didn’t let it change her partying style 😂 The only thing she did was take it easy on the drinks (sometimes...)

There were times where I could see that Ali was so tired and fed up, but she always powered through!

Ali, you’re a tough lass, I’m proud of you and everything that you do ❤️” – Emily

This next (and absolutely lovely) little piece is from my best friend Megan. I have known Meg since primary school, and in secondary school, we were literally inseparable. Nowadays, we don’t often get chance to see each other and can sometimes go months between catch-ups, but whenever we do get together it’s like nothing has changed; we’re transported back to our teens, laughing about everything and nothing. We have been there for each other in our darkest times and always lift each other up. I honestly can’t believe how much she loves reading my blog. For this to have an impact on not only sufferers, it means the absolute world.

“Ali is the most selfless friend I have, and it shows every time I see her. She never brings up her pain or struggles with Rheumatoid Arthritis, which is probably why I didn’t find out she had it until about 6 months post-diagnosis when it just slipped into conversation! This is why I find her blog so inspiring and interesting to read, as she doesn’t always disclose what she really goes through to me – not because she doesn’t want to talk, just because she’s so tough and just gets on with stuff. As long as I’ve known her, her attitude has always been “it could be worse”.

Ali’s best trait is not letting anything or anyone stop her doing what she wants, and personally I love that about her. I’ve known her for 19 years, so I know she struggles with certain things (some of which I wish she had talked to me about more), but all that time she’s been such a positive person to be around and grow up with because of her can-do attitude. Even if she doesn’t feel great, you won’t notice it because of her strength to push on. A couple of months ago she started writing a new piece for Creaky Joints Under Young Skin, I was sat with her and she said: “it feels weird to be writing so much about myself”. I think that’s just the self-doubt and anxiety talking, something that a lot of people (including me) probably wouldn’t push through. But she did, and I really admire her for writing this blog. It takes guts, but so many people are reading and enjoying it! I look forward to reading every post because it feels like I’m getting to see all those parts of her and learn more about what she goes through and actually understand it. So, thanks, Ali. Keep doing your thing and keep raising awareness.❤️” – Megan.

Next up, my boyfriend Dan. I just want to take this space to thank him. Every time I post a new piece on this blog I worry that it’s not good enough or that it’s not helpful to anyone, and every time Dan reassures me to carry on, so if it wasn’t for him I wouldn’t keep posting them <3

“I didn’t think it was such a big deal when Ali was diagnosed, she just took it in her stride. Before the diagnosis, she wasn’t on the farm as much as she now, due to Uni and other commitments. She also wasn’t used to being on our farm, so she was shy and didn’t always want to do much in front of other people; she never believed in herself as much as I believed in her. Despite her illness, she does so much more now than she’d ever done before, and credit to her! She’s carried on, never telling me when she’s in pain or fatigued. I can sometimes tell by now (still not all the time) but she’s too stubborn anyway to stop what she’s doing if she’s in pain or go in the house to rest or put her legs up. I know what she’s like so I know it’s better for her to stay outside and I just try my best to make her laugh so that she doesn’t overthink it and beat herself up about it. The only time she doesn’t do something - either when I ask or just of her own accord - is if she falls asleep after tea. Once that happens it’s impossible to get any sense out of her. She’s just a half-asleep, mumbling blob of nonsense.

Ali has had problems with her knee since her skiing accident, so ever since we were friends in school she’s never really been able to be that active (or as active as she would have liked to have been) but she still cracks on with anything and everything she can. She definitely does less waddling (limping!!) now than she’s ever done ever since I can remember from school, which is so much better to see.

Ali has her off days - being a sassy bitch, crying, not talking - but they’re few and far between. It’s no different to anyone else really. No one is perfect. You wouldn’t know that she’s dealing with something like this if you didn’t know her. I think the arthritis has brought on a lot more for her mentally, which is tough, but it has made her open up a lot more than she used to. I think what tipped her over the edge and made her really start to open up to people was losing her Grandad Mick in 2018. Losing her first grandparent really hit hard and then we lost my grandad the year after and then her dog a month later. I’m not saying it gets easier every time you lose a grandparent, but you definitely get to know how to cope with it a bit better, so for her to lose her first grandparent on top of everything else, it was tough. Ali has definitely benefited from opening up and I think she has finally realised that too now.

I don’t see Ali any different to before. If anything, it’s made her stronger – both mentally and physically. It’s made her value life more, wanting to do anything and everything she can and always trying to please absolutely everybody all the time. She doesn’t give herself enough credit and I don’t think she realises how much she does and how much she deals with. She’s an inspiration.”

This piece is from one of my best friend’s Milly. She is the Mother Hen of our group and I wouldn’t have her any other way. We met in Sixth Form and Milly, Megan and Becca have been absolute rocks ever since. My first day at Sixth Form I was on crutches and they were the ones holding doors open for me and helped me settle in. They are always there for me with prosecco and cake. Lockdown has made me realise how much I treasure our times together and they are the best brew or drinking partners.

“When I first read Ali’s blog post, it made me sad hearing about how much she had struggled with her arthritis and not wanting to be open about how she was feeling. I knew before about how much pain Ali has been in, it was common for Ali to ask me ‘have you got any ibuprofen’ when she’s round at my house or when she would be the designated driver on nights out as she couldn’t drink due to her medication but I didn’t grasp the enormity of it all until Ali started writing her blog.

The blog not only helps Ali to talk about how she is feeling but also it can help all her friends and family understand a little bit more of what she has to go through every day. I hate not being able to help Ali get better but I know that a way I can help her is by being there to listen to her and I’ll always be there for a brew and a chat and cake obviously! I’m really proud of Ali for starting her blog, talking about her diagnosis and how she is coping and how it fits in around her lifestyle.”

Finally, my Mum and Dad. They have been there for me every step of the way and I know they always will be. I owe absolutely everything to them; I am so, so grateful for everything they have done my whole life. I would not be who I am today if it wasn’t for my amazing parents. My two sisters have been absolutely amazing too. They haven't had time to write a piece but I hear it plenty of times from each of them. My biggest sister Steph has 3 young kids so barely has time to have a glass of wine never mind write an essay. My other sister Dee edits every single one of these posts so already does so much for me. These blog posts would not sound half as good if it wasn't for her, she makes this just as much as I do <3

“The first thing I remember was the worry - the worry of why she was constantly swelling with every injury, then with no injury, just spontaneous swelling of her wrists - ‘what is happening?’

Seeing her suffer, as her mother was (and still is) heart-wrenching.

With the shock of her diagnosis, I was devastated. The youngest of our 3 daughters, My baby. All I could think was ‘what had I done wrong? what had I missed? and for how long? She’s so young, so active. This should be me not her’.

As a mother you blame yourself. Watching your child suffer in pain is harder than suffering the pain yourself, you just ache to take it away.

Shortly after Ali’s diagnosis, I heard a line in a play, a mother speaking to her daughter, ‘When you hurt, I bleed’ The words resonated through my head and my heart. I needed to care for and protect her. I knew she needed to learn to deal with it herself, and that, she would, I knew that, but first, I had to look after her.

I am so proud and in awe of how Ali has dealt with and is dealing with her RA and her life in general. Her desire to help others in her blog, her chosen career and her daily life. Ali is a strong and determined young woman. Remembering her determination as a child, she would work and work at something until she mastered it. Like riding her bike, she was quite shy too so she took herself off up and down the driveway, only when she could ride it properly we could watch her! She doesn’t grumble or complain about her RA, she doesn’t say when she is in pain, I have to ask! Never once has she said ‘why has this happened to me?’ Medically ‘how does this happen’, but not ‘why me’.

She has had her down times, mainly through frustration or thinking of others, she once said, which was heart-breaking, ‘why would Dan want to be with me like this?’ ‘Oh my love, because he loves YOU’ I told her, ‘and couples help each other through their hard times’. Dan is a lovely young man and I know he’s good for Ali and he’ll be strong for her. They do make a good team.

For Ali to wear her heart on her sleeve in writing her blog is a huge step, she’s always been one to just get on and not say very much, except when she tells her funny stories. From being very small she’s made us laugh, especially with her one-liners.

With my love to you Ali. Keep on being the person you are.

Love, support and encouragement, are the ones that come easy. Standing back and just being there ready to help when needed takes a little more adjusting to - but this is what’s needed of us.” - Mum.

“My first question when Ali received her diagnosis was, of course ‘What on earth is someone so young doing with arthritis when it's an ever-increasing condition of the elderly, isn't it?’. I thought, surely this diagnosis can't be right, or is it just a fob-off answer for the GOK (god only knows) in medical notes.

I confess to having to look it up, for which I was fairly ashamed for having to do so and for not knowing. After reading I was soon much the clearer on the implications and life-impacting diagnosis of my daughter's condition. I had to turn my thoughts immediately to how both her mother and I could support her through what was inevitably going to be a very different life to the one we had all blasely assumed she would have.

Well, there have been some pretty dark days for Ali where her physical ability and mobility have been reduced to very little. But never once have I heard her complain or wallow in self-pity. In fact, quite the opposite, her stoicism and infectious desire to be happy and make those around her happy, despite what life throws at her is quite humbling. As is her attitude to her life, which she refuses to allow RA to define. Her enthusiasm and commitment to her chosen career of physiotherapy is first class, which can only, from her point of view, look twice as hard as it will demand quite an amount of physical ability from her body. What wonderful traits to impact on her small nephew and nieces and hopefully, in good time, her own children.

As her father, I am full of mixed emotions, but the one constant is how full of admiration I am for the way she handles not only the pain but the mental torture.

We are fully behind you Ali; there to fall back on when you need and wishing you every success in your career and life.” - Dad

My hope with this piece it that it reaches out to family members and friends of other chronic illness sufferers, letting them know just how much they mean to us. I also hope sufferers take comfort in the knowledge that their family isn’t alone – there’s so many more like them. As I’ve touched upon in previous posts, my head is filled with doubts and negative thoughts about how my arthritis affects my relationships with friends and family, but since doing this, those doubts have lessened! I feel so much better, really lucky to have the support I do. I’m amazed by the kindness and compassion of those around me.

Hope you are all okay,

Ali x

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