This Sava Wellness Community interview occurs during Disability Pride Month in July. Disability Pride Month is an opportunity to get to know differing abilities better and to acknowledge that differences make us strong. Make sure to talk to people with disabilities/chronic illnesses in your life and celebrate what makes them who they are. If you have any questions about disability/chronic illness that you would like answered, you can book a Chronic Illness/Disability Support meeting with Sava Wellness owner Sarah, and she would be happy to answer your questions and help you become more comfortable with chronic illness/disability.

Hello Geri! It is wonderful to talk with you today. Could you please tell us a little about yourself?

I live in NYC. My husband and parents have been truly incredible within my chronic illness journey. My husband was my boyfriend at the time when I started to get sick. So he’s seen me at my best and worst. My favourite hobby is Netflix, currently loving Bridgerton. I love Broadway and all things Disney! I currently work full time and luckily I am able to work from home which has helped tremendously.

Do you have a diagnosis for your symptoms? If you have a diagnosis, can you tell us what it is and describe what that means for you? 

I was diagnosed with lupus in July 2017 then I was diagnosed with sjogrens and non-hodgkins lymphoma in 2023. 

In 2017 I began experiencing several symptoms but the first being joint pain. I would wake up really achy and stiff and had no idea what was going on with my body. I was 27 at the time and equated that with getting older and thought that it would go away eventually. But it didn’t. Soon I couldn’t open doors, write my name or do my makeup. It was even painful to just walk a few steps. I then scheduled an appointment with my pcp [primary care physician] but unfortunately since my symptoms were not visible, I was not taken seriously. She suggested exercise and stretching and if the pain got worse I should take Tylenol. She was the doctor so I believed her. I had no idea that I was being medically gaslit. But soon my symptoms got worse. I soon had shortness of breath, sharp pains in my chest, edema, and my labs were all over the place. I went back to my pcp and demanded she look into this more. Now that my symptoms were visible she took it more seriously. We ran tests until finally it was determined I had lupus. There was a lot of trial and error with my medications. There is no one size fit plan so we had to experiment on the dosage, which medications I took, etc. until we finally found one that worked for me. Fast forward to 2023, I was experiencing new symptoms of dry mouth and felt a lump in my gland. After an MRI and 2 biopsies I was then diagnosed with sjogrens along with non-hodgkins lymphoma. I did 4 rounds of rituxan [antibody therapy] and am currently on the wait and watch protocol. Later this month I will be going back for my 1 year pet scan.  

Does having a diagnosis help you? 

Yes. I know the reason for my symptoms and now can have a plan going forward.

How long did it take for you to get a diagnosis? 

It took a few months from the start of my first symptoms for lupus. With sjogrens and non-hodgkins lymphoma it was within weeks.

When did you first realize that you had chronic illness and how has your journey been since then? 

Probably the day I got my lupus diagnosis. I was told there was no cure and I would have this forever.

How has your experiences of the world changed since your symptoms started? 

I definitely have to slow things down and have to be careful who I’m around. I’m also still masking and am scared everyday if I’ll get sick.

Which of your symptoms do you find the most debilitating and why? 

Fatigue and joint pain. If I’m too tired I’ll mostly be in bed all day. Joint pain can be debilitating and I’ll have to take Tylenol to ease the pain.

What has been the most helpful for you as you have gone through this journey? 

Having a great doctor and a great support group. During my initial phase of my diagnosis I did so much research online. No one in my family had lupus or any autoimmune disease so I turned to the internet. Thankfully there was so many resources online and social media was a great outlet to connect to other warriors. In late 2020, I decided that it was time that I began to share my story on social media and created my Instagram account. It’s amazing to see how the chronic illness community can come together and be there for one another. I’ve gained so many virtual friends and hope to meet them in real life one day. I also became a writer for lupus.net sharing my stories and tips/tricks on how to deal with lupus. 

Is there anything you would like people to know about your chronic illness or chronic illness in general?

I have learned that our diagnosis does not define us and we are stronger than we think. It has been a tough road, but I continue to fight my battle and am taking it one day at a time. I know I’m stronger than my diagnosis and will get through this! 

Thank you Geri! You can find Geri on Instagram @everydaylivinglupus