The Story of Two Sisters: Living with Autoimmune Diseases

What chronic illnesses are you currently living with?

Diane: I have psoriasis, psoriatic arthritis, fibromyalgia, and endometriosis.

Sylvia: I have Lupus, Type 2 diabetes, and Rheumatoid Arthritis. I was diagnosed with diabetes in 1999, lupus in 2005 and RA in 2008.

How have your chronic illnesses impacted your life?

Diane: I have had psoriasis for over 50 years, psoriatic arthritis for 25 years (but was just diagnosed in the last 10 years) and was just newly diagnosed with fibromyalgia. It has been overwhelming to say the least. I have had a range of emotions from “Why this did happen to me?” To feeling anger, depression, and disappointment.

This disease has made me feel like I have been in a prison my whole life all while enduring a constant roller coaster of emotions. These diseases have drastically changed my quality of life. So much so that I often drift off into another world and pretend I was never told I had psoriasis, psoriatic arthritis, or fibromyalgia.

Sylvia: For many years, I went unaffected by chronic illness. It was not until I temporarily lost my sight and fell down the steps that I learned I was diabetic.  I began medical treatment ... always fearful of my blood sugars falling into a dangerous level.

Our mother went into a diabetic coma at the age of 37 and passed away.

While it has been a long journey,  we continue to be positive in our health and strength. Knowledge has always been a guiding force. Especially the knowledge that always lingers in the back of my mind of my mother’s blood sugar rising to a fatal level.

I have really worked diligently to change my diet and lifestyle. I have managed to keep my Sic levels at 5.9. We have the understanding that our health is all we have.

What is it like to have a sibling that also lives with chronic illnesses?

Diane: My first memory of realizing that I would be separated from my siblings due to my chronic illness was at a very young age; probably around the age of 5 or 6. 

I was taken to the hospital on my first day of school. I was not allowed to enter because I was 90% covered in psoriasis and everyone thought I was contagious. I remember feeling terrified that I would not see my sisters again.

I couldn’t understand what was going on and why I was being put in a locked room. I remember saving my little boxes of cereal to give to them as presents when I saw them again.

Before my middle sister was diagnosed with a chronic illness, I remember her saying that she might as well been be an only child because everyone was always taking care of me. I was in and out of doctor offices and hospitals as long as I can remember.

Sylvia: The many years I watched Diane live with chronic illness opened my eyes to how important it is that we take care of ourselves. She was always very vigilant in her healthcare. I saw the pain and suffering of all she had to endure. There were so many times where I felt helpless witnessing her anguish and knowing that there was nothing I could do.

I believe she was the first person I ever saw experience true suffering and pain. I would eventually understand that pain when I was diagnosed with both Lupus and RA. 

How do you support one another?

Diane: When we were kids and I was covered in this disease from head to toe, other children would point and make fun of me. Sylvia would hug me and say she loved me.

We have found the time in later years to talk with family and friends together about our conditions and what support we need from them. We’ve also found that we thrive when surrounded by positive people who make us feel good about ourselves.

My sister has called me every single day for over 30 years to ask me how I’m doing and to make sure I’m not overextending myself.  As I’ve gotten older, she actually calls me more. She lets me know that I need to simplify tasks and prioritize commitments.

One of the best pieces of advice she gave me over 20 years ago which I have taken to heart is not to judge myself. This is an important lesson to learn when living with a chronic illness.

Sylvia: My sister’s illness spoke to me. Sisters support one another. It has been a blessing to have a sister that can understand what pain looks like, what it feels like. We often share stress relief strategy to figure out how to make it through the day.

We have talked about how her having an autoimmune disease first started all this (Jokingly, of course!)

At the end of the day, we both desire health and wellness.

Have you ever engaged in advocacy work together?

Diane: Yes, we planned an awareness walk in Washington, DC a few years ago. We have also lobbied on Capitol Hill together and at Town Hall Meetings as well as attended conferences and seminars.

Sylvia: It’s all in the family. Conferences and meetings are always a pleasure because we get to soak up experiences and information that are of equal importance to us. Traveling together has been a bonus...even with the chronic conditions.

Sylvia and Diane - sisters.jpg

Do you have any memorable stories to share about your chronic illness journey together?

Diane: I’ve had psoriasis for over 50 years and have plenty to show and tell. When I was in elementary school, there were a lot of times I felt both different and special at the same time. I say this because my psoriasis was very acute and covered 90% of my body at 7 years old. I had nurses that would pick me up at school and transport me back and forth to my psoriasis treatment. This was back in the 60’s when there wasn’t much information on how to treat this disease. I missed a lot of school due my psoriasis, and was even hospitalized for a while.

I would like to share a bright moment in my elementary school days. Every year we had a special day called, “May Day”, where we engaged in fun activities for the whole day. I was in the 2nd grade and my teacher asked everybody to bring in something for show and tell. I didn’t have that luxury of having anything to bring in; so I had to improvise. I ended up bringing my sister who was 5 at the time. I hid her under the table when I got to school and of course my teacher ended up seeing her. She scolded me and said that I was not to bring a person in as show and tell.

When I think of this situation, it reminds me of all the times I’ve had psoriasis flares, how it was always visible, and how it always showed up.

I like telling this story because this has been the story of my life for years. I recall wearing masks on this day because there would be nothing to show to the world so therefore I had nothing to tell. I always wanted to put on a mask. It has not been an easy journey when people are questioning you about what you have; especially when you're a child. You just don’t want say anything. But having a sister on this journey has been a blessing.

Sylvia: I can recall when my sister first got Psoriasis. It was scary for me to see her sick and not understand the reason. When she was taken to the hospital and they shaved her head; I could see she was very sad. I took scissors and tried to cut off my hair so I could looked like her... needless to say our mother was not happy.

Any final thoughts?

Diane: Make your mess your message!!!

Sylvia and Diane - sisters.jpg

Diane & Sylvia are sisters living with multiple chronic illnesses and dedicated to working together to raise awareness and support fellow patients through writing and local advocacy projects.