One of the ‘skills’ we seem to develop when having lupus is how to lie, or to put it another way, not quite telling the truth. That may seem a weird thing to say, but we spend quite a lot of time playing down our symptoms and pretending we’re fine. This is for a number of reasons, including: we get fed up of talking about how we feel, we don’t want to mention it for fear of being given unwanted ‘advice’, it’s not that easy to talk to healthy friends about lupus and get them to understand exactly what it feels like, but often the main reason is that we try to protect friends and family as we don’t want them to worry too much.
““I feel horrible, but I want to get through the day. It isn’t going to help me or you if I say how horrific I feel so I just lie, lie, lie. No one can do anything. I can’t even do anything. It isn’t going to help anyone and certainly not me to say how horrible the pain is, so I lie.””
Some of us also develop what I like to call ‘the skill of omission’, things we don’t admit to people we’re close to, again for fear of upsetting them. We don’t necessarily do this with everyone, there could be one or two people that we feel we can tell the truth, usually the people closest to us.
So what are the most common things people with chronic illness don’t admit?
We get lonely
We wish people would visit or invite us to things more. We know it’s difficult as sometimes we have to cancel last minute, but it’s very easy to become socially isolated and that’s very bad for us and our mental health in particular
We want to feel ‘normal’ and take part in things that other people do, even if it costs us every bit of energy we have it’s usually worth it. At the very least send us a text or an e-mail to let us know you’re thinking about us.
“I don’t admit that I feel lonely. When you are sleeping constantly you are separating yourself from the rest of the world. And the pain is so segregating — you own it, no one else is sharing that pain, you are alone. It is hard to feel connected to others when you crash for days.”
We can feel like we’re a burden
We’re living with an incurable illness and may sometimes need help, but often don’t want to ask. Our partners may have now become our carers and that isn’t what they signed up for, so we fear becoming viewed as a burden.
“I’m in more pain than someone could even imagine. I wouldn’t wish this pain on my worst enemies. I don’t like to complain to those around me because if I did, I’d be complaining 24/7 and I don’t want to be ‘annoying’ or ‘a burden’ to anyone.”
We sometimes need help
As mentioned above, we don’t want to be a burden, but we also sometimes desperately need help. If only friends and family would offer it, ideally making a suggestion as to how you can help us such as - ‘I’m doing some shopping can I get you anything?’ We won’t feel such as burden if you can include helping us as part of your normal daily routine, then we won’t feel as though you’re going out of your way too much to help us.
“Needing help to do the simplest of tasks but not wanting to admit I need that little helping hand to get through the day can make it worse as I get stressed over not asking or admitting the help would actually help me. I try to hide it all from the ones I love dearly.”
We worry about lupus – sometimes a lot
I don’t know about everyone else, but the middle of the night seems (to my brain) to be the perfect time to overthink everything and worry. Lupus is a disease that you have little control over, we never know what will happen next and naturally we worry about that. If I’m in the midst of a flare that makes things even worse and I worry that it might become much more serious.
“I have so many other problems on top of my autoimmune disease. I constantly worry I will develop a new symptom or a new illness that will take away more of my time and energy.”
We can be jealous of you
If you are what we would consider ‘healthy’ we can be quite jealous of that. It doesn’t mean that we’re not happy you’re healthy, it’s just we wish we were too. You may take the fact you go to work every day, go out shopping, run round with your children or even just stand up for any length of time for granted, but those are the sort of normal things others can only dream of.
We’re sometimes faking a smile
I’d be pretty sure that everyone has done this at some time. The problem with this is that sometimes people think we’re faking our illness when it’s the smile we’re faking to mask the constant pain we feel. Sometimes it’s just easier to paste on a smile than have to explain, yet again, what we’re going through.
We’re having a good day
This might sound strange but it’s one that I will actually admit to. I don’t like to tell other lupus patients that I’m feeling ok as, despite the fact I know they’d all be pleased for me. I want everyone to feel the same so I feel guilty that I’m ok and they’re not. Others avoid telling people they’re having a good day as not everyone understands that things can change very quickly and the next day they may feel horrendous. Some people will see us doing things, or out and about and they may think we’re faking illness or, worse, are now ‘cured’.
We feel guilty
For patients that work they often say they feel guilty, if they call in sick or are just not at their best they fell that they’re letting colleagues down as they then have to take up the slack. We also feel guilty if we can’t see friends as often as we’d like, participate in family activities, do the housework/cooking etc etc as others do. To be honest we just generally feel guilty about having lupus and all the issues it brings with it, even though it’s in no way our fault.
“Having two big days in a row wipes me out, and I need a quiet day with little interaction, which is hard for my son to understand as he just wants to talk to me.”
The reason we sometimes don’t invite you into our houses
We have periods of time where we feel continually exhausted and in pain, this means even basic housework gets pushed onto the back burner. It’s embarrassing so we might avoid letting anyone into our houses until we find the energy to sort it out to at least a relatively reasonable state again.
“My housework falls behind, my washing falls behind, my sorting of things and objects falls behind. I want to have a clean and tidy house but find that dumping things in piles has been the only thing I can do now. I’m constantly tired of battling a fight I don’t think I’m ever going to win.”
Sometimes we can’t even do the most basic tasks
We can have days (sometimes longer) where we literally don’t have the energy for even the most ‘simple’ task that others take for granted, such as a shower/washing our hair/brushing our teeth/shaving/changing our clothes.
“Some days it takes all day to get enough energy to shower, so around 3 p.m. I start to get terrible anxiety thinking someone will come to my door and think I’m lazy or dirty because the laundry is on the sofa, dishes in the sink and I’m unshowered and in bed in the middle of the day!”
We don’t want to explain
As mentioned at the start of the blog, we sometimes simply don’t want to explain how terrible we feel because we’re sick to the back teeth of it. We just want to deal with it without having to discuss it, explain it, or have any sympathy expressed about it. Sometimes it’s easier for us to not talk about the pain and just cope with it the best we can.
We want to you to learn more about lupus
When I find out that a friend has an illness I will immediately look it up and see how it may affect them. It also saves them from having to explain it to me, incase they don’t really want to talk about it. So even if you just learn the basics, it will show you care. If you want to learn more about lupus click here.
Angie Davidson
The content on this blog should not be seen as a substitute for medical advice. If you have, or think you may have lupus, always seek advice from a qualified physician. Find out more in our Terms of Use.
