A non-visible disability (also known as a hidden disability) is a condition, whether that be physical, mental, or neurological that is not immediately obvious to the naked eye. One such condition, is lupus, which is an autoimmune condition where most symptoms are not visible. Some symptoms include fatigue, chronic pain, and sun sensitivity. These are not symptoms you can see, which can make life living with a non-visible disability extremely challenging.
I cannot count the number of times I have said ‘I’ve lived with lupus since I was 14’. Sharing my story comes a lot easier and even empowering now with so much practise, but at the same time, it can be hard. When explaining my situation to people who don’t live with a disability, it can be awkward sometimes because it’s not something people always naturally get. I’ve had conversations where the other person doesn’t know what to say, they find the conversation difficult, or uncomfortable. For some people, they give me pitiful looks not knowing how to respond. So, for a long time, this was a reason I didn’t share what I went through, because it also became easier for me to just pretend there wasn’t anything wrong with me (especially since I didn't look like there was). The ‘how are you’ question turns into ‘I’m good, how are you?’ rather than telling people how I am really feeling as I imagine it would be tiring to hear the same thing all the time which is ‘I’m exhausted, I’m in pain, but I’m okay.’ In some respect, it was easier because lupus is a non-visible disability, but in reality, it just makes things stressful.
I had imposter syndrome for a long time and sometimes I still do because society’s view of disability often includes you being in a wheelchair or using some sort of mobility aid. I compared myself for the longest time to people who ‘had it worse’ in my mind, when I should never compare my situation with somebody else’s—it just invalidates my own experience. I’m able to work, I can enjoy my hobbies, and I was able to do certain ‘milestones’ like go to university, which not every disabled person can do. I have learned to adapt to what I have to go through in order to live life. But this makes it more confusing when I explain to people how I am actually feeling because I don't 'look ill', I'm 'too young to be ill'. But one of the reasons why I did feel this imposter syndrome, or sometimes still do is because what I go through isn’t visible… so it can’t that bad, right?
Living with lupus means I live every day in constant pain, I’m fatigued, and my body does quite the number on me before I even get out of bed. I have the privilege that most days, I can force myself out of bed, even if I don’t want to and just want to curl up and stay there all day (which sometimes I do). But it’s not something I can readily explain to people.
‘You’re so lucky you can just stay in bed all day’, ‘You’re just being lazy’, ‘Just sleep more’...
People do not always understand that no amount of sleep helps my fatigue, I don’t feel lucky at all being in bed all day and I am certainly not lazy—my body a long time ago decided I would have little choice. But it’s hard to explain to people when I am so active and am lucky enough that I can do things most days—I just do it with more pain, more fatigue, and have to try 1,000 times harder to do anything compared to the average person
Having a non-visible disability can also make it incredibly tough in medical appointments. Most of the time, when I try to explain how I am feeling, the healthcare professional has no idea what to do with me. I’m not undermining their expertise at all, but I imagine it is difficult to figure out what is wrong with me when my symptoms are things like nausea, brain fog, fatigue, pain… all of which they cannot see. It also makes me more prone to medical gaslighting which can be extremely debilitating.
The toughest thing for me living with a hidden disability is finding that understanding from people around me. I know it’s not out of not caring for me, but is just more difficult to understand because it is not something many people (especially at my age) go through.
Finding the right words that accurately translates how my body feels is extremely taxing when people cannot see how much I am suffering.
But there are ways in which other people can show more understanding to those with non-visible disabilities. This varies person by person, but this is some ways in which you can show your support.
Be a safe space
One thing you can do is actively listen to when a disabled person is explaining to you their challenges. Even if you don’t quite grasp how someone can be in pain 24/7, try to find ways in which can be helpful to them. One thing that helps me a lot is when people just listen to me vent, without any unsolicited advice. Often for me, when it becomes something I have to vent about, it’s because there are no solutions, I’ve tried them all. Other people giving me advice I never asked for can be a bit patronising and even frustrating. It can also be helpful to ask the person if they are looking for advice or just a vent, so you know as a friend, what is useful for them in that moment.
Remember what we tell you
This depends person by person, but if someone has actively told you things that can help, try and remember it. I understand we are human, that you may forget, but it can mean the absolute world to us if you remember the small things. Often, when I ask for support, I feel like a burden, so if someone else remember that I need to rest more, need to stay in the shade, or ask to sit down, it can really take the weight off my shoulders—it costs you nothing, but it can cost us everything.
Be inclusive in activities
Don’t get me wrong, I love a full day out from morning to evening. As a proactive person where doing all these things can often distract me from the realities of living with lupus, it can be amazing to do all these things as if my body can do them. I understand that I cannot be included in every activity and that is absolutely fine by me—as much as I hate to say it, I do know my limits. It is okay to invite me to those activities anyway for me to say ‘no’, to know that I was thought of.
For when it is possible for activities to be accessible, try and consider what your friend needs. Another symptom I have is shortness of breath and I can’t stand or walk for long periods, so walking is extremely tiring for me. Some things that help me is using the lift rather than stairs, taking things slow, and trying to find shade. The list seems rather long and you may forget some of it, but even if you remember some things, it is always appreciated.
As much as I love a grand day out, I do also love days that don’t take a lot out of you. Consider low-energy activities, where we just have a quiet day together. Some things may include watching a movie, maybe having a craft day, or spending time with each other that doesn’t mean needing to figure out how to get there, how much energy it will take, and just concentrating on the quality time.
Be supportive
This seems obvious, but it can be surprising the amount of people who haven’t always been supportive when I tell them what I go through. Sometimes I have people invalidate what I go through, telling me ‘it can’t be that bad’, ‘But you were fine yesterday’, or ‘What more can I possibly do to help you?’
Ask the person you know what it is they can do to support you. Every individual living with lupus has a different story to tell, so not everything works generically for all of us. This is why questions matter—see what you can do to individually tailor support for each person you care about.
Educate yourself
Most people are passionate about things that impact them, it’s just part of human nature. But if people learned more about lupus and how it affects me and the rest of my community, it would make a huge difference to all of us. Whether you learn that through people online, medical papers, or asking the person you know who has lupus, showing this interest and learning more about it is extremely endearing and shows you care that little bit more. If someone you know with lupus is open to it, learn more about what they go through and educate yourself through personal experience as that’s very different from learning textbook information.
Be empathetic to the ‘chronic’ part of lupus
One thing that is difficult about having a non-visible disability is explaining how it is chronic—lupus currently has no cure so I will live with it for the rest of my life. I am just not as strong health-wise, my immune system is weak, and I’m more prone to getting ill. For some, lupus affect the organs, which becomes a lot more serious and can ultimately result in things like kidney failure.
Be empathetic to the part that our condition is long-term. We may not get used to that fact and every so often be down because of the grieving process we go through and wishing we didn’t have to live with all these extra symptoms. Try not to invalidate our experiences and say ‘thing will get better,’ and ‘everything will be okay’ because as much as we know you mean it with good intentions, it can be hurtful to hear these phrases knowing that’s not necessarily the case and is definitely not how we are feeling in that moment.
Communicate with us transparently
Not everyone will be the same, but I like planning out my days so it is easier to manage my energy levels. The Spoon Theory, although not completely accurate, is a great start in trying to understand energy levels in disabled people. There is a huge difference to me meeting someone for brunch and meeting someone for an afternoon coffee as for starters, I would have to wake up a lot earlier for brunch than a coffee in the afternoon. It takes up a lot of energy for me to get out of bed, where I wake up every day questioning if I really need to.
Unfortunately for me, I wake up naturally around 6am even when I don't need to. My body does not allow for me to fall back asleep most of the time, or function so I couldn't even start my day then if I wanted to. So If I had to get up for brunch at 11am, I would be using those hours to mentally prepare getting up (which sometimes takes me a couple hours), compared to feeling more relaxed in the morning knowing I have more time to do that preparation if I was meeting someone at 3pm for coffee.
So, if possible, try and communicate those plans earlier so I can plan for my energy the days leading up to it. For days that end up taking more energy than I had planned for, it can really do a number on my body and I end up flaring up. It does mean for days after that, I might need to make last minute changes to timings or change in activities depending how bad it is, but I try my best not to do that by planning my days out and adjusting how much energy to use for each day.
Reach out to us
Sometimes, with our lack of energy, we may disappear and not talk to you as much and cancel plans. It can be a lot to deal with our health, but that is our biggest priority so all the concentration going there can mean we are difficult to reach. It can mean a lot if you then reach out to us and check in, ask us if there is anything you can do to support us during that time or spend time just relaxing with us. Surviving itself can be exhausting when living with a disability, so knowing we are thought of, even just through a quick message can mean the world.
Advocate for us
Often, I hear people say how much they support disabled people but their support may not be the most helpful. Unfortunately, the world around us is still extremely inaccessible and unaccommodating to disabled people despite the fact anybody can join our community at any moment and most people know at least one disabled person.
As much as I appreciate any support from people around me, move your advocacy to other spaces. Push for accessible workplaces and public spaces. Share what you have learned with other people, whether that be a post on social media, speaking up when you see something isn’t right in public, or correcting another friend for saying something ableist. Help us with our movement, because in the long-run, that helps everybody.
Instagram: @thechelseainfusion
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