Tell us about your experiences with weight management. Take our survey!

A woman with a sad expression stands in front of circles that show the five senses of hearing, sight, smell, touch, and taste.

Altered Senses From Lupus

Living with lupus has been a journey filled with unexpected twists and turns. Beyond the physical toll it takes on my body, I've come to realize how deeply it can alter the way I perceive the world around me. In short, I have altered senses from lupus. My sight, touch, taste, and more have all been affected. I have had to come up with some creative solutions to navigate around these changes.

Featured Forum

View all responses caret icon

Altered senses from lupus

An eye.

Sense of sight

One of the most noticeable shifts since my lupus diagnosis has been in my vision. Dry eyes and sensitivity to light have become very familiar companions. Reading a book or even staring at a computer screen for too long can feel like a monumental task. It's as if the world is in constant flux. Like it is a kaleidoscope of shapes and colors that I have navigate with care.

In response, I've become well-acquainted with prescription glasses and lenses tailored for light sensitivity. These simple tools have transformed my experience, allowing me to engage with the world more comfortably. And honestly simply allowing me to be able to see the world in a clearer view.

Additionally, I've embraced using any and all things available to me to help with my sight. I visit the ophthalmologist often to stay on top of it all.

A hand.

Sense of touch

The changes in my touch perception have been equally difficult. Joint pain and swelling have become unwelcome visitors. Ultimately, making tasks that were once easy and second nature, like tying my shoes or holding a pencil, a daily challenge. The world of textures has taken on a new significance too. Even the softest fabrics can sometimes feel like rough sandpaper against my skin.

To adapt, I've integrated ergonomic tools into my daily life. Specialized utensils and writing aids have transformed mundane tasks into much more manageable ones. Gentle exercise routines and physical therapy have become essential. Those activities help in maintaining my dexterity and managing the pain associated with those touch related symptoms.

A nose.

Senses of taste and smell

While alterations in taste and smell are less commonly discussed in the context of lupus, they have definitely played a role in my journey. There are moments when I get a metallic taste in my mouth. Also, the food flavors seem to elude me. It's a sure reminder that even the simple act of enjoying a meal can be a unique experience for those of us with lupus.

In response, I've turned to a culinary adventure of sorts. I have been experimenting with diverse flavors, textures, and temperatures. Fresh herbs and spices have become my best friends. They have helped in providing a burst of sensation that gets past any momentary taste impairment. Experimenting with those herbs have proven to also be very healthy for me. Exploring different cuisines and being mindful of the tactile experience of food works. It has added a new layer of enjoyment to my meals.

An ear.

Sense of hearing

Lupus has also indirectly impacted my hearing. As if everything else wasn’t enough, this continues to remind me that this condition encompasses far more than meets the eye. Conditions like scleritis have led to pressure behind my eyes that have actually affected the structures of my ears. This has resulted in a little hearing loss and a persistent ringing from tinnitus.

Being able to clear the issues with my eyes have helped with my ears some. And getting my ears cleared every couple of months helps to open up the hearing canals.  Additionally, I've honed my skills in saying "huh" and "what" until I can hear the entire statement. I have to laugh at that because my husband often responds with, "what are you deaf today"? And all I can say is, "yup I am!"

Sensory experiences with lupus

In conclusion, living with lupus has been a journey of adaptation, resilience, and creativity. The shifts in my sight, touch, taste, and hearing have been hard. But I've discovered a newfound appreciation for the complexities of my sensory experiences. With my support system that understands as well as empowering adaptive strategies I've learned a lot. I've learned that even in the face of altered senses, life can still be rich.

As a result of realizing life's richness life becomes more meaningful, and full of vibrant sensations. I know I just have to make concerted efforts to be mindful in each sense to be able to get past any and all issues.

Do you have altered senses from lupus?

By providing your email address, you are agreeing to our Privacy Policy and Terms of Use.

Treatment results and side effects can vary from person to person. This treatment information is not meant to replace professional medical advice. Talk to your doctor about what to expect before starting and while taking any treatment.
This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.