It’s been just over 2 months since I received my lupus diagnosis and started on all the treatment and medication that entails. I’ve discussed things with friends and family, I’ve already seen a multitude of doctors, and god knows how many blood tests I’ve had (I think I’m finally getting used to them – have only fainted once!) It’s been massively informative regarding the disease, and although I feel like it really has taken over my life (for the time being), and maybe I’m a little too obsessed with looking up websites and blogs dedicated to lupus – it feels good to not only have a diagnosis, but to also know what to do about it.
I can’t forget that this disease is for life, and that it will affect many aspects of my life. It’s only been 2 months, so I have so much more waiting for me. This is kinda terrifying, but at least I’m prepared. I’m worried about realising when a flare up is occurring, how it will affect my future studies/work/travel, and my mother has even suggested looking into egg freezing because fertility can be affected. I don’t want to even think about kids for at least ten years, and when I do I have to be prepared to deal with the lupus affecting the pregnancy. When you’re the type of person who sometimes can’t decide what shade of lipstick to wear that day, thinking about the future on these terms makes you want to hide under your duvet forever. When all else fails, take a nap – those are my words to live by. Either that or have a cup of tea to mull things over.
ANYWAY these last 3 months have been overwhelming, but not unbearably so. They really have been informative, and it seems knowledge and awareness is the best form of defense against lupus (y’know, after the actual medication). Here is a little list of things I have learnt since the diagnosis, that may/may not be useful for anyone else facing a recent medical diagnosis.
Side effects are unpredictable but manageable
Oh god the side effects from the medication – and I’ve only had a few. The worst was as soon as I left hospital I got shingles, which is common with immunosupressants. The pain was unbearable, it got to the point I could barely leave my bed and that’s why my dad decided I had to return from Spain. That has since nearly healed (currently sporting the sexiest of giant scars on my torso), but now I’m dealing with weight gain, a massively unflattering moon face, burred vision, and a current cold along with random bouts of weakness and nausea. These are all a lot more manageable and don’t have too much of an impact on daily life (except it does get depressing having to see my unsightly face in photos and the mirror). However it’s important to remember that these aren’t forever, and a fat face is better than a failed kidney!
People will have their own opinion
Opinions aren’t always trustworthy or factual, but people will express them regardless. Sometimes it can be very useful, other times you want to shove a leaflet into their hand or direct them to an informative site. Although apparently even these should be taken with a pinch of salt, because lupus is different for everyone. Best to trust the opinion of doctors, especially the ones most knowledgeable, talk to those with similar experiences, and trust your own instincts. Help others become more informed, especially close friends and family. Let people express their thoughts though, chances are the’re trying to make sense of it just like you are.
Some people won’t understand – that’s okay
Generally I’ve felt so lucky with the support I’ve received but I won’t lie that there have been some people who, for lack of a better phrase, don’t seem to give a shit. And this can be upsetting, but it does no good to dwell on this. I’ve had some odd responses, and I’ve even be told that I shouldn’t be sat around feeling sorry for myself (trust me I’m not). You can’t make everyone understand and you can’t make everyone sympathise. Those who matter will be there for you, just focus on that. Everybody always has a lot going on in life, so be your own best form of support, and appreciate the support of others.
Jokes about catching lupus are annoying
It’s not contagious or infectious, but if these jokes are made I worry people will think so because there is too little general knowledge about the disease. It feels weird referring to it as a disease, because the word makes me think of gross body stuff that you’d rather avoid. Yet here I am with a disease but the only current gross, contagious thing about me is my runny nose. Promise!
A positive attitude is the best amour
Yes it can be overwhelming, people often describe feelings of anger with the diagnosis. Depression is common, and no wonder. I’m not saying “oh just try and be happy”, because that is stupid advice, but do your best to keep a positive attitude. It’s not the end of the world, and it’s no longer a terminal disease. It is life altering, but it can make you stronger mentally because if you can take on the wolf, you can take on anything! Allow people to keep you company, get yourself out of the house if you can, and even make jokes with the doctors and nurses. Allow yourself to be moody and mopey about things, but don’t let this be a common state of mind. Keep on enjoying life!
Support is amazing
As previously stated, I’ve been amazed with the support and love sent my way since my diagnosis. This really helps with the positive attitude and keeping you upbeat and strong, because at the end of the day people are awesome. Don’t be afraid to reach out to people if you’re feeling lonely, or to have a bit of a moan even if they don’t ask directly how things are. People will want to talk to you about anything, even if it’s about nothing in particular.
Pill boxes are very useful
It makes me feel like I’ve aged 60 years, but they really are bloody useful. At first I couldn’t make head or tail of all my medication, and I did get completely mixed up on occasion, but now with the help of my pill box I feel better organised. It’s much easier to organise all the medication once a week rather than every day (although it doesn’t stop being a chore). Plus it helps you memorise which pill is which, which is useful when you accidentally mess up your pill box (yep, done that already).
Fish is awesome
There is no specific diet to follow with lupus, just the general healthy lifestyle is recommended, that everyone should take on board. Sticking to the good, nutritious stuff does really have an impact on your health: both physically and mentally. I have increased my fish intake now, especially when I was in hospital, and I could really feel the benefits. It might just be a placebo effect, but it certainly doesn’t hurt.
Garlic is bad
I’ve been advised not to drink tea of coffee thanks to my lupus induced amaemia (which I ignore but shhh), which was heartbreaking. And then I find out garlic can trigger lupus flares because it’s an immune booster, and with lupus your immune system is waaaaaay too active to begin with. I love garlic, so this did not make me happy. Nor have I completely heeded avoiding garlic, but shhh again. It’s delicious, I cannot deny myself such deliciousness.
Ian Harding is more lovely because he raises awareness
Ever seen Pretty Little Liars? It’s an utterly ridiculous, far fetched TV drama a friend has gotten me hooked on. One of the starring actors, Ian Harding who plays the GORGEOUS Ezra Fitz (who loves literature and is therefore my dream guy), has used his fame from the show to help raise awareness and money for lupus charities because his mum has the disease. Therefore not only is he gorgeous, and I can hope the real person loves literature as much as his character, but he is also bringing goodness into the world by giving lupus the attention it needs. Yay!
Useful Lupus Websites: