Nicole’s Story: Living with Lupus
Hey there readers,
In honor of lupus awareness month, this weeks topic will be focused on my personal experience with SLE. Living with an autoimmune disease can be extremely difficult for many reasons, but the ones I want to touch on today are the horrific experience of diagnosis, the impossible task of changing your lifestyle, and the strain placed on relationships.
Now, I can only truly speak on my own personal diagnostic journey, but through my conversations with friends and on various lupus blogs, I know that many people living with lupus have a similar experience to mine.
My issues with joint pain and sun sensitivity began when I was only 10 years old, but my first big flare happened about 7 years ago. I was covered in hives from head to toe, had a low-grade fever, severe joint and muscle pain, headaches, rashes, the whole nine yards. I went to urgent care first.
They looked at the rash and since I was living in a college town (regardless of the fact we were there for Law School and living in a single-family home) they assumed it was scabies and sent me on my way.
Clearly, it was not.
My PCP took one look and told me it had to be allergies. Again it was not. Once they actually began doing blood work and realized my ANA was elevated I was referred to a rheumatologist. Now I have been to 6 rheumatologists and every single one would listen to my symptoms and immediately begin tests for lupus.
It has always been pretty clear that everything pointed to lupus, but besides my ANA my blood didn’t show much of anything. They diagnosed me with fibromyalgia, but they always ended up stumped for anything else.
After seeing five rheumatologists I finally began treatment for lupus. The hydroxychloroquine, though no miracle drug, helped drastically with my symptoms. The rash cleared for the first time in 5 years and my fatigue decreased significantly.
My joint pain was tolerable as well. I was finally feeling like I had more control. That was until I realized that they still refused to provide me with a proper diagnosis. Now, I tried to see where they were coming from.
That was until I found a medical journal that provided the diagnostic criteria for SLE. Based on the criteria provided you had to have an elevated ANA and meet 10 points on the list of possible ailments associated with SLE. Well according to that diagnostic criteria with my ANA of 320 and 19 points I should have been easily diagnosed.
To this day I do not understand the point of withholding a diagnosis. Thankfully, there is a community of people that understand this frustration here at Autoimmune Alliance and so many other foundations and nonprofits focused on lupus.
At first, I was so focused on what was wrong with my body, but following my diagnosis I have come to realize that no matter how many doctors I saw, my quality of life wasn’t changing. I had to change. That was the hardest pill to swallow. I was 25 years old and I just wanted to live my life, but the way I was living was exasperating my symptoms. I won’t lie and say I immediately made the necessary changes. I struggled. I continued to go out, to drink, to stay up late, to use too much of my energy.
It wasn’t until 3 years later when my body in no uncertain terms said NO MORE that I finally recognized that I needed to reevaluate my lifestyle. I couldn’t continue to over-exert myself and fill my body with inflammatory substances. Today I am working on listening to my body by resting and sleeping when I need to. I am also, to varying degrees of success, cutting out alcohol, dairy, and gluten from my diet due to their inflammatory nature and my body’s negative reaction.
I know many people have had success in minimizing their symptoms through a change in their lifestyle and I hope that I will have a similar result.
Finally, one thing that is not often discussed when speaking about the experience of living with a chronic illness like Lupus is the strain that it can place on relationships. As if being in pain isn’t enough to deal with our brains start to work against us as well. There is this nagging guilt that constantly tells you that you can do more. That you’re using your illness as an excuse. That you aren’t pulling your weight.
It’s wrong clearly, but sometimes the difficult thoughts can drown out the logic. This can be hard for any relationship. It can also feel very isolating when your family members or your partner can’t truly comprehend the burden of chronic pain and illness.
The most important thing to remember is that you are not alone. You are never alone in this. There are 23-50 million other people in the US alone who understand to some extent what this experience is like and we are here for each other. Those of us that are lucky enough to have supportive family members and partners, allow them to help and remember that they can’t read your mind. They can’t help if you don’t ask for it and if they aren’t willing to help then someone else is.
Living with lupus or any chronic illness isn’t easy, but with the proper lifestyle changes, support from everyone around you, and appropriate accommodations and care, we can not only survive this life, but we can thrive! So thrive with me lupus warriors!
xoxo Chronically Candid
