World Lupus Day: Understanding life with Lupus

May 10th is World Lupus Day, and here are some tips on how to navigate working with an autoimmune disease to ensure smarter working and good coping mechanisms.

May 10th is World Lupus Day. A day where people can raise awareness of Lupus to help those who are diagnosed and those who could potentially become SLE sufferers.

As someone who has seen the effects of Lupus first-hand and has grown up witnessing the damage and pain Lupus can cause, I wanted to share some information and advice about the autoimmune disease with you all to raise awareness.

But I just want to preface this by saying I am not a medical professional. The information in this blog post is purely from what I know about Lupus from seeing it first-hand. It is here to offer guidance and hopefully help you understand a bit more about Lupus.

What is Lupus?

Lupus, or Systematic Lupus Erythematosus, is an autoimmune disease that causes inflammation in multiple body parts. It essentially means that the body's immune system attacks healthy tissue.

It can affect different organs and joints in the body. As such, it is a chronic illness that can go on for many, many years.

Symptoms and Treatment

Currently, there is no cure for SLE. However, with medication, it can be managed.

Whilst medication can manage Lupus and suppress symptoms, there is a likelihood of flare-ups where symptoms can become worse.

Lupus can manifest in different ways in different patients, but some of the more common symptoms are:

• Extreme fatigue

• Joint/muscle aches

• Rashes from sunlight (the most common is the 'Butterfly Rash', going across a person's cheeks and nose)

• Inflammation

Other symptoms can include headaches, swollen glands, fever, hair loss, and mouth ulcers.

Living with Lupus (SLE)

As mentioned above, Lupus is an autoimmune disease I'm familiar with. Often in the UK, it isn't that widely known among the public, however, the awareness surrounding the disease is growing, particularly because it is common in the US.

Therefore, I want to share some tips that I've come to learn and see in action for those suffering from Lupus.

Working with Lupus can be one of the more difficult aspects of the illness to deal with. If your symptoms are severe, not under control, or you're having a flare-up, it can be challenging to get through a typical working day.

And some jobs may feel impossible for you to do when diagnosed with Lupus.

However, there are some things that you can do to help you manage your Lupus whilst working.

Working with Lupus

Stay on top of your medical management

If you have been prescribed medicines to manage your Lupus, it's important for you to stay on top of them. Remember to take the required amount of medicine at the required time.

It won't do you any good to miss a dose, especially if you have a busy working week. By staying on top of your medical management, you'll give yourself the best chance at keeping your SLE under control and avoiding any flare-ups.

Confide in your employer and trusted colleagues

Lupus isn't an autoimmune disease that you can hide away in your pocket. It is an ever-present illness, so confiding in your employers is important.

Telling your employer about your diagnosis may not be comfortable for you, but them being aware means they can help you should you need it. You can tackle working hours, break times, workload, and more with them if they know.

If you have a trusted colleague at work as well, it might be worthwhile to tell them about Lupus and give them an indication of symptoms. That way, they can help you and support you when you're in pain and working.

Manage your stress levels

High stress levels can impact autoimmune diseases by increasing symptoms. Therefore, it's important for you to manage your stress.

It can be easier said than done, but by finding ways to cope with stress and to calm yourself, you can decrease the impact of Lupus. For instance, trying some meditation or mindfulness can be beneficial.

Allow some break time

If you have Lupus, there is nothing good that can come from working a full day, five times a week, with no breaks. Having an autoimmune disease requires you to look after your body and know its limits.

So, when working, whether that's full-time or part-time, allow yourself some time to have a break. Take a few moments throughout the day to just sit and rest, letting your body recuperate so that you'll hopefully feel better for it.

Balance your spoons

Have you ever heard of the Spoon Theory?

If not, the Spoon Theory is a metaphor used to explain the energy levels of those with chronic illnesses. It was created by Christine Miserandino as a way to explain to her friends how Lupus affects her to make them understand her fatigue.

The Spoon Theory, therefore, is explained like this:

Each spoon represents a unit of energy. Every action in a day, from the moment you wake up, requires energy. But for those with an autoimmune disease, like Lupus, they only have a finite number of spoons each day.

For an able-bodied person, getting out of bed, cleaning their teeth and having a shower may only require one spoon. But for someone with Lupus, or other autoimmune diseases, these actions may require a spoon each.

These actions may seem like second nature to some, but for those who are chronically ill, they require so much energy.

By the end of the day, someone with Lupus will probably have used up all of their spoons, maybe even before noon. And they can't get those spoons back.

So, if you have Lupus, make sure that each day, you take into account the number of spoons available. If a task isn't necessary for that day, then don't feel like you have to do it.

Today is World Lupus Day. I hope that if you or someone you know has Lupus, this blog post can offer some guidance.

Until next time...