Last year, I wrote an article with a similar title about what Lupus has taught me. Whilst I still live by those statements, a year has passed and a lot has happened since then. Life is as good as it can be (living with a chronic illness) and the biggest lesson Lupus has taught me is to live. It sounds funny, but this chronic illness (morbidly meaning I could die a lot easier than the average person) gives me the motivation to live my life to the fullest. It has made me the proactive person I am because I love keeping busy. This is not a dig at anyone who doesn’t like doing that as I understand we all have individual differences, but I don’t want to waste a single minute of my life doing something unproductive. Instead, I want to engage in any activity thrown at me, fill up every void in time I could possibly have free, meet as many people, learn about their experiences, have new experiences… The world truly is my oyster. Whilst I don’t feel we just have one life, this is the one I know. And I’m going to make the best of it.
Perseverance is one of the best things you can do. When things get difficult, when you get knocked back, what makes the person is how you react to this setback. Do you need some time to think? Do you find a solution? Do you mope for a year? This is obviously very dependent on the situation, but one other way to go about it is perseverance. Think logistically and find a way to solve the problem, don’t let anything stop you from what you want to achieve. Figure out how to get round that obstacle, find out who can help you reach your goals, and sacrifice things holding you back. Persevere.
Leading on from that, Lupus has taught me how to create realistic goals. Whilst I dream big, in order to make my dream come true, goals need to be set so I can actually achieve it. I don’t want my dreams to just be dreams, I want them to be a reality someday. When you know your limits, you have to take them into account when trying to do something. So, I can continue to persevere, but that does not mean there won’t be other setbacks in the long run. No dream is easy to chase. It is one of the reasons why I like planning and organising. You can’t expect something to just fall on your lap, you have to work for it, earn it, and then you can be proud of it. Because you have achieved you dream.
Worry less as some things are just not worth worrying about. I’m not a particularly stressed-out person and there’s a reason why. Living with a chronic illness means I have bigger things to fry. When you have physically (and mentally) been worse, some things (or people for that matter) are just not worth the time. They aren’t worth taking up valuable space in your brain constantly worrying about something. If I do end up stressed, I will just cause my own flare up and I would hate for anyone or anything to be the reason my health deteriorates. It’s not worth it when you could be spending your time doing something more productive. Find a solution, be practical and if you can’t control it, accept it.
Lupus has taught me to place energy in things that are worth draining it for. Like what I explained in my article on the Spoon Theory, it is important to know how much energy you have and then what to do with it. For as long as I can remember, I have had to plan out my days (sometimes weeks and as far as months) because I know my energy will not last. It is one of the reasons why I so actively plan my day to the point people think I’m crazy. Don’t get me wrong, I can do spontaneity, but planning helps me plan my energy levels. It helps me know what I can realistically achieve that day by how much I physically (and mentally) put time and effort into it.
Lupus has taught to be (more) empathetic. I’ve been told I’m naturally quite a caring and considerate person. I’m the type of person who asks you if you are allergic to nuts before opening a snack packet of nuts in case I kill you by accident (which some of my friends think is bizarre). But when you struggle with something as severe as a chronic illness (not saying you have to do so in order to be empathetic), it makes you see life in a different light. It makes you really care about the people around you, because you never know what they are going through. I understand that feeling of people not understanding, the assumptions people make, the lack of consideration even after knowing. You don’t know what anyone is thinking. You don’t know why anyone feels a certain way. It is important to note everyone is different – give the benefit of the doubt (reasonably) because trust me, some people would rather not speak about their struggles until after they feel better. It’s why I didn’t start writing articles about my Lupus until I actually knew what I was talking about.
Patience is key. I’m quite a patient person, I don’t tend to rush things and I don’t mind (if it’s reasonable), waiting for things. When you are constantly juggling medication – sometimes even on drug trials – you learn a thing or two about patience. I have been juggling medication ever since the start of my Lupus journey seven years ago. We have yet to find the perfect solution for me and I don’t think we ever will. This is not to be pessimistic; it is that I have tried most of the things made possible (in the UK) where my doctors themselves have told me for the time being there are no alternatives. Whilst a new medication might pop up, that does not mean it will react well with other medications or my body itself. I can’t predict anything and so instead I’ve learned to be patient. Trust me, it can be particularly hard when the nurses on the ward put me in more pain than easing it or some consultants patronising me about what I ‘don’t know’ about my condition, but choose the ‘be patient’ route. It’s a lot better.
Although it has taken me a while, Lupus weirdly helps me choose what kind of people I want in my life. Whilst I used to let things slide, it’s time to do things my way. A simple test of how much someone cares goes a long way. I’m so used to people asking ‘how are you’ as small talk, I forget sometimes people really mean it and want you to feel comfortable sharing your experience. I’m not asking everyone to do this as I know it’s not the most fascinating or happy subject, but you do get enlightened when you start to compare how different people treat you. A great example is when a random stranger I’ve met twice (where my condition came up in conversation) made the link between my tiredness, acknowledged it and even apologised for making me ‘stand for so long’ when I asked whether we could sit down to talk. I didn’t feel I needed this apology, but the fact he gave me one really took me by surprise. In comparison, some of my (once) closest friends do not even offer to hold any one of the four bags I was holding on a long walk, when they weren’t holding a thing. Find the people who are considerate, find the ones who are supportive, find the ones who truly care. Find the ones who listen to you, comfort you, tries to understand you. I could list so many people that have truly been a good friend to me whilst considering my condition, but that could be a whole article in itself.
Following on from this, I have learned to never expect full understanding. Whilst I do have some absolutely incredible friends who try their best to understand, nobody ever will. It is the sad truth but it is why I would never expect anyone to understand, to go out of their way to make my life easier, and quite frankly, I don’t want them to understand it. I don’t want to wish upon anyone the pain and suffering I endure every day. But I will say this – if you did go that extra mile and acknowledge the difficulty and without asking, just help, I will never forget it.