How many times have you heard “aren’t you too young for that”?
If I had a quid every time that’s been said to me… well, let’s just say I wouldn’t still have a Peugeot 206 which is falling apart as I drive!
It’s not something I seem to have gotten used to. Every time I hear it, I feel the familiar frustration rise again; but, however annoyed it makes us, we must understand that people only say it because arthritis is most commonly associated with osteoarthritis in the elderly population. The majority of people don’t know anything about Rheumatoid Arthritis, or even that it exists. Why would they? We only ever hear about the most common conditions and the more life-threatening conditions. I know I didn’t know about it until I got diagnosed!
I think we need to use this frustration to help spread awareness and knowledge. No-one else is going to do it for us, especially if they’ve never heard of it before! In my experience, GPs know very little about the condition, so why would the general public? Invisible conditions can be hard to live with, and even harder to explain to others, so education is the best way forward.
So, for those of you who aren’t sufferers, or who are perhaps newly diagnosed, here’s a little run down…
Rheumatoid Arthritis is an auto-immune disease, which means your immune system starts to attack your body’s healthy tissues. The main way it does this is with inflammation in your joints. But it can have complications with other organs and conditions such as heart disease, lung conditions and strokes. It is considered as a long-term condition, so once you are diagnosed, you have it forever. You can go into remission and not display any symptoms, but sufferers often relapse and have to go back on medications. Often with some success, many people try to fight their RA with herbal and natural remedies.
Something a lot of people may not know is that anxiety and depression are very common alongside all long-term conditions. Some may think that, as it just comes with the condition, then it’s part of the package and just something we must deal with, no questions asked. On top of the chronic fatigue that comes along with many long-term conditions, burying your head in the sand, ignoring and dismissing mental health concerns, can be extremely detrimental and dangerous.
We are all very different – some may find talking about it all the time helps, whereas others may find it easier to pretend they’re invincible. Having been through the whole spectrum, I have found somewhere in the middle is the best place for me – not ignoring it, but not letting it take over; not having to hide it, but not talking about it all day, every day; some days not even remembering I have it and some days focusing on it and trying to figure out how to help myself. I think a lot of it comes from the constant worry that comes part and parcel with RA. My worries and fears lie with the things I need to do in life, from completing Uni assignments, to being able to function to the best of my ability at work and being the best I can be when helping on the farm
When it comes to family and friends, I still struggle with finding the line - there are always little things that they won't understand – or, at least, I think they won't understand - because, how could they? They don't have it and I would never expect them to understand. But the line between them not understanding and me thinking they don't understand is so fine.
For me, one of the hardest things is knowing how much other people want to talk about it. I don't want to be the one to bring it up, for fear it will seem like I'm always talking about it. I guess the only way to know is to ask – to have that chat about it with your nearest and dearest. It may seem like a weird and awkward conversation, but it is so worth it. Although I am very happy for anyone to ask me questions or just to chat about my condition, I don’t want anyone thinking I’ve got it all figured out! Believe me, I haven’t! I’ve only had this conversation with my boyfriend, I haven’t had the strength to have it with my family or friends… yet! I suppose this is because I only feel like you can have these conversations when you’re a bit down, and I put so much effort in to not being down around my friends and family, I never feel like there is a right time.
Though you don’t always want to be the centre of attention, it’s important not to spend your time walking on eggshells around your loved ones. I think the most important thing to remember is that YOU are in control! It’s YOUR body, YOUR right to talk about it as much or as little as YOU want to. Your loved ones only ask questions because they care. It took me a long time to accept that, and even now I often need reminding.
Don’t forget the wise words of Dr. Seuss - "Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind."
I don't know if it's because of the condition or just the person I am but I want to be able to help anyone and everyone I can, in any way I can. I want to do anything and everything I can, for myself and others. It almost feels a bit like being in the Yes Man movie!!
Of course, I’m only human, so sometimes, much to my dismay, my RA stops me – something I’m only really comfortable accepting around my boyfriend and family, because I know they understand and support me. Sometimes it’s the depression, fatigue and 0% motivation stops me (which leads to me feeling even lower that I have let it beat me – such a vicious cycle!)
I want you to know, for yourself or others, it is okay to feel like this. It is okay that you can’t do everything all the time. Look after yourself. Protect yourself and love yourself. Keep talking to the people around you and you can always reach out to me or others. Anything is worth a try if it’s to help yourself.
Looking forward to hearing your stories and to having a chat :)