This year, I have come onto my tenth year living with lupus. As much as this is a milestone, it is definitely not something I feel I am
‘celebrating’. Upon reflection, it’s been a bit of a rollercoaster - ten
years of adapting to symptoms I shouldn’t have to, arranging my
life around medical appointments, and lack of understanding
doesn’t seem much to be celebrated.
Don’t get me wrong, there are things I am grateful for-my family, friends, the community, and the work I do is extremely reassuring and motivating. But it does make me feel sad sometimes knowing this is what it is going to be like for the rest of my life, where in four years I will have lived with lupus longer than I haven’t. But as much as lupus has been a burden on my life, I have also learned some things from it.
1 People will not always understand me
As much as I wish they did, people will not always understand me. I will try so exceptionally hard to explain to people what I have to go through but some people will not get it. Trying to explain how fatigue and chronic pain affects me will be a pain in itself, but I won’t let that stop me advocating for myself as there are people that will try their best to understand me and play a supportive role in my life.
2 I will know my story like a script in a play
I know my story like the back of my hand. It may seem silly—doesn’t everyone know their own experience? ‘I’ve lived with lupus since I was 14’, ‘It’s an autoimmune condition’, ‘I really struggle with chronic pain and fatigue’. I could not count the number of times I have said these things because it is part of who I am and I am very comfortable in sharing those experiences.
3 I have learnt to advocate for myself
I have had so many struggles on a daily basis. People walk too fast, people don’t help carry things, they don’t always consider my constant internal struggle. Having to constantly fight is exhausting, but it is something I must do. I must advocate for what I need, because I can’t always expect anyone else will. So, I will continue sharing my story to those who will listen, educate people on what it is like to live with a disability, and support others who do too.
In the same vein, I had to learn to fight for myself when it comes to my own healthcare. Unfortunately, I’ve had to deal with so many different healthcare professionals that use their authority to undermine mine. I strongly believe in an equal partnership when it comes to a healthcare relationship. Whilst the healthcare professional has the medical expertise they have trained for, I have been training for years, learning about my body, what works, and what doesn’t work. I’ve had to become a ‘pushy’ patient because sometimes I may not agree with decisions a healthcare professional made without my consultation. I’ve had to deal with medical gaslighting, made to feel like my experience is invalid and doubt what I went through was real. It took me years to realise that this was what was happening, and being able to acknowledge when this is happening is incredibly empowering to say - ‘No actually, I know my body best.’
4 I will feel like a burden sometimes
I wish I didn’t, but I often feel like a burden. To feel ‘useless’, not being able to do the same things my peers can, is upsetting. To have to ask for help, even if it is as simple as asking your friends to walk slower is not a great feeling. But I need to remember this: I am not the burden; lupus is the burden on me.
5 I will struggle with grief
Growing up with a disability at such a young age does mean that you will grieve parts of you that you lost. The experience of being diagnosed was so traumatic for me that I don’t remember a lot of it, but it also means I don’t remember what my life was like pre-lupus. I don’t remember what it is like to not wake up fatigued, in pain. Sometimes I wonder if it was a blessing because I can’t remember what I missed so I can’t compare—my imagination doesn’t even allow me to imagine what it is like.
Struggling with grief is a part of living with lupus and it is okay for me to grieve parts of me that I’ve lost. Go through those emotions because, at the end of the day, lupus is going to be with you for the rest of your life, and it’s okay for me to be upset by that fact sometimes.
6 I will feel contradictory of the invisible mask
For the most part, I feel incredibly lucky that I am able to get up most days, I can go to work and enjoy my hobbies. I’ve been told by people that my activeness means people often forget I live with a disability, meaning I have to constantly remind people of what I have to go through. It is exhausting to have to do that, to be totally honest, and I don’t think I should have to. But the reality is, living with a hidden disability is difficult because, for some people, if they don’t go through it themselves it can be difficult to relate and understand, since it is not something that impacts them.
It can be a really hard struggle to feel people do not care about me because of this. It is always in the back of my mind that perhaps people don’t because they don’t care enough to remember. I wonder how different it would be if all my symptoms were, in fact, visible. Perhaps then, people would finally see me as a disabled person and I wouldn’t have to hide certain parts of myself just to make it easier for other people. The contradiction I feel with dealing with a hidden disability can be difficult, but it has been easier for me the last few years to unveil the invisible mask and share how I am truly feeling.
7 I will adapt
When you live with so many extra obstacles that hinder you day-to-day, you tend to be better at adapting and problem solving because you have to find things that work for you. A lot of the time, I feel it is subconscious, but I had to learn to adapt to a new way of living, otherwise I wouldn’t be able to survive. One thing that massively helps me is planning. I have always found the reassurance of knowing when I am doings beneficial because then I can plan for my energy, which massively helps me minimise flares. This is especially useful with having to plan for medical appointments as well, and having a calendar is helpful with brain fog and forgetting too
8 I will get better at empathy
Not to say that you have to live with a disability to be more empathetic, but I think it’s definitely helped me understand more about other people and their struggles and try my best to be there for others during these times because I know that would be beneficial to me if I was in their shoes.
9 I will be part of a loving community
Nobody ever wants to be part of the disabled community, but it’s a community that I absolutely love being in. Everyone is so incredibly supportive and it’s absolutely amazing to find that kind of relatability you can’t find elsewhere. It makes you feel less isolated that you are not going through everything alone and that you are not the only one feeling this way—that can be truly comforting, even if the struggles are bad.
10 I learnt to find things that bring me happiness
Over the years, I was put in various extra-curriculars to keep myself busy and try different things to see what I liked. I tried things like tennis, piano, chess, ice skating, horse riding… just anything that could potentially be fun and allow me to be a child. The only thing that stuck from those extra-curriculars was table tennis, which I have now been playing for over a decade. It’s a great form of stress-relief where, as an attacker, it feels amazing to get that across when playing table tennis.
As well as that, I found love for crafting from a really young age. When I was first diagnosed, I missed a lot of school and so my mum would take me to Hobbycraft and let me choose different kits to enjoy. I now spend most of my spare time creating, from drawing, making stickers and things out of clay, trying out fibre crafts like embroidery, punch needle, and crochet which is my favourite. You can now hardly catch me going anywhere without some yarn and a hook working on my current project.
Doing all these things make me extremely happy and it is important to find those aspects in your life when you live with a disability. Find those things that you enjoy because it can be great to do when you need some down time or need something to distract you for a bit. You don’t even have to be good at it, you just need to like it!
The last ten years have definitely been a rollercoaster. I’ve had many ups and downs, just like many people will go through, whether or not you have a disability. I’ve had to do a lot of learning, from adapting to my new life, to changing the way that I believe things where things are not my fault because I live with a disability. But I’ve also gained things like empathy, the ability to adapt, and to be part of such an amazing community is absolutely incredible. They allow me to be myself without any judgement, they make me less isolated, and to feel empowered in sharing my story which I will continue to do.
Instagram: @thechelseainfusion
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