Living With Systemic Lupus Erythematosus

This week we are fortunate to learn about living with Systemic Lupus Erythematosus , from our reader and featured writer, Georgina Whalen.

Part of what propelled me to find my way to better health was seeing him sitting next to my hospital bed for hours looking so worried.

Georgina Whalen
living with Systemic Lupus Erythematosus ,  from our reader and featured writer, Georgina Whalen.
living with Systemic Lupus Erythematosus , from our reader and featured writer, Georgina Whalen.

My diagnosis: Systemic Lupus Erythematosus

What were your symptoms?

Photosensitivity  Chronic fatigue  
Chronic joint pain, stiffness & swelling  
Kidney damage  
Fluid around heart/chest pain  
Fever  
Headaches

Raynaud’s phenomenon
Water retention
Hair loss
Skin rashes

Can you share with us the diagnosis story?

When I was first diagnosed I was lost, unbearably sad, feeling bad for myself, and also in denial. I was in my first years of college and leaving my new friends felt like the biggest injustice.

However that was when the real work began, I was hospitalized countless times, underwent multiple kidney biopsies and chemotherapy infusions to help my team of specialists find out just how bad things were and find a solution to help me live a healthier life.

Prior to my 2018 wedding I began eating more of a raw, plant-based diet in an effort to keep my energy up and shed some extra pounds. I began sleeping better, my mood improved, and most importantly my lupus marker levels began to improve.

I took it a step further, bought a Garmin watch that tracked my stress levels, daily activity, and sleep quality. I began researching the different diets people had success with and focused on the AIP and renal diets. Though my doctors did not prescribe either diet, I wanted to see if it would make a difference.

By January 2020 my doctors told me I had successfully entered remission and could begin tapering off what had been the bane of my existence for 14 years: prednisone. 

That was a GOOD day and I still tear up thinking about it.

When I was first diagnosed I was lost, unbearably sad, feeling bad for myself, and also in denial. – Georgina Whalen.

living with Systemic Lupus Erythematosus ,  from our reader and featured writer, Georgina Whalen.
living with Systemic Lupus Erythematosus , from our reader and featured writer, Georgina Whalen.

How has it impacted your dating life or relationships?

The medicines I took made my face swell (moon face) exponentially which looked very unnatural and I was incredibly self conscious. The corticosteroids also caused weight gain, acne, and insomnia. 

Dating is tough enough but I had dates ask me if they could “catch” what I had, and others dismiss me completely not wanting to deal with a sick person and all it entails.

When I began dating my now husband I let him know my full history, battles, side effects, and the future battles that may be ahead. Part of what propelled me to find my way to better health was seeing him sitting next to my hospital bed for hours looking so worried. If I had any ability to change things, I would because I didn’t want that to be his life. (Related: 5 Reasons You Should Date a Woman with a Chronic Illness)

Part of what propelled me to find my way to better health was seeing him sitting next to my hospital bed for hours looking so worried. – Georgina Whalen

What lessons did you have to learn while living with Systemic Lupus Erythematosus?

Being diagnosed was incredibly humbling for me.

It showed me how much inner strength I possessed.

It helped distinguish those that were real friends through the fun times but also my sicker days.

It made me a much more empathetic person to all those with any type of struggle. My disease is considered invisible and I always keep in mind when someone may treat me not so nice, that I never know what invisible battle they could be fighting too.

What steps did you take or how did you cope/find acceptance?

Therapy helped a great deal, I sought to find a therapist that specialized in chronic illnesses that was equipped to guide me on my journey.

Finding a lupus community helped a lot too, being amongst people going through my exact struggles helped me feel a lot less alone when my friends and family could only relate so much.

What advice would you give to someone struggling with their health or journey?

Lean on your community for help when you need it, they won’t pity you, they’ll be glad to help.

No one can tell you how you should act or react to what you’re going through. This is your journey but finding those also battling a similar one can be so helpful (I belong to several Facebook communities!)

You don’t have to share, health journeys are incredibly personal. But if you feel inclined but have hesitated, know it can be incredibly freeing for you and so eye opening for those around you.

living with Systemic Lupus Erythematosus ,  from our reader and featured writer, Georgina Whalen.
living with Systemic Lupus Erythematosus , from our reader and featured writer, Georgina Whalen.

What do you wish others knew?

Until I was diagnosed I thought I was an invincible young person who played every varsity sport, maintained a great GPA, and had a great group of friends.

No one is invincible, but whatever challenges that do come your way can be turned into some of the most rewarding moments. Of finding inner strength and of connecting deeply with others.

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No one is invincible, but whatever challenges that do come your way can be turned into some of the most rewarding moments. – Georgina Whalen

I definitely didn’t realize the impact of my food on my body until this. I eat differently now (paleo based – no dairy, gluten, soy or grains, pasture raised meat, grass fed/finished beef). It’s really the little things that add up to having a healthy gut & body.

Tell us about the post you cried writing?

Though I do get personal on my blog from time to time (especially lately with the nightmarish date recaps) it is rare that I broach the topic I am about to now.

Eight years ago I got the news that changed my life forever. 

I remember that Summer like it was yesterday. I was working at Victoria’s Secret with friends, going to the Cape on our days off and looking forward to heading back to school that Fall.

August of 2006 is when I was diagnosed with Systemic Lupus.

I rarely talk about it with people that do not know me well. There is a stigma that surrounds “sick people.” They are often pitied or may be doubted when it comes to everyday expectations. I have always made sure no one can tell I am sick just by looking at me.

I do not usually blog about my my chronic condition because this is my happy and introspective place. The thoughts that go through my head about my own illness may not always bring happiness to others and I cannot expect anyone to understand.

There are many difficult situations that I have faced with my illness, nights laying in the hospital by myself, wondering why something like this happened to me, so young. Chemotherapy infusions, minor surgeries that had to be performed while I was awake and so scared. 

I often wondered what I did wrong to deserve it all.

It was not until later that I realized it was the best thing that has ever happened to me. With any difficulty comes strength, character and eventually, hope.

Read the rest here. https://www.anotedlife.com/lifescript-post-i-cried-writing/

Where can we find you on social media?

https://www.instagram.com/georgina.whalen/

Show Georgina how grateful you are for her wisdom and advice by sharing this with your fellow spoonies and friends!

Well said Georgina, here at Sickly Confidential, you’ve made us really tear up as you shared your story and we are here to support you and cheer you on in your journey. We’re going to be here cheering you on, feeling inspired, and encouraging your success.


If you know someone with an inspiring outlook on living with a chronic condition, rare disease, or terminal illness, we are looking for more featured writers. You can submit their information (or yours) here.

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