When The System Fails You- An Open Letter to the 2020 Lupus Summit

"You have Lupus."

It's not something you want to hear but by the time I got to this particular point in my journey, I was just relieved to have a name for what I had been going through.

It started as a few aches and pains, and a little bit more exhaustion than I was used to. No big deal I thought, I’m pushing 30, I have a stressful job, and I don’t know how to say no. So I did what any 30-year old does and I got a gym membership. I lost almost 75 pounds, I was a cross fitting beast, and was in the best shape of my life yet I still felt terrible.

I went to the doctor every year with the same complaints and was told I simply needed to lose more weight. But I had done that and even after losing the weight, I still felt the same. How is that even possible? Not one person throughout 4 years of exhaustion asked more questions or thought to seek further understanding about what could possibly be wrong with me and instead I was offered diet pills by my physician.

It wasn’t until my body finally hit a solid brick wall and my symptoms became so intense that I actually stopped walking due to the severe muscle spasms that I was even taken remotely seriously. It took three months, 15 emergency room visits, a hospital stay, and my mother (who is the sweetest woman you will ever meet) screaming at the doctors before somebody finally suggested I begin being tested for autoimmune diseases. By time I was sent to a rheumatologist I found out that I had already been testing positive for lupus the entire time I had been in and out of the hospital and not one single person caught that on the blood work. My inflammation markers were through the roof and the muscle spasms, touch sensitivity, and swollen joints were so intense that I was having to get my then boyfriend to help me with everything- including bathing and using the restroom.

The first time that I realized that I actually COULD have lupus was when I went to the rheumatologist and I started reading over the paperwork asking me questions about symptoms that I had been experiencing.

• Severe dry mouth so intense that it made me look like I had been chugging koolaid? Check. I thought that I had been experiencing an allergic reaction to Chapstick since I was so prone to sensitivities. 
• Hip pain? My PCP had assured me it was my weight and gave me diet pills. 
• That psoriasis on my legs I had asked the doctor about? Lupus discoid rash. 
• My sudden change in gut health- developing a ton of food sensitivities? Getting older. 
• The fact that I routinely ran a fever every night and had swollen lymph nodes? “Oh you’re stressed and probably have a virus you can’t shake- take a few days off.”

The list went on and on- everything from my periods becoming unbearable to even how my nails changed in texture. Literally my entire body’s chemistry had changed without anyone making the connection.

By the time I left that first appointment, they had taken 15+ vials of blood and I had answered yes to all 11 criteria on the Lupus list. I knew when I left that first appointment that I had my answers. I was so relieved to finally have a name and to have proof that I wasn’t crazy. At the time I don’t think I processed what having Lupus was really going to mean for me long term.

That next visit when I got the results and diagnosis was eye opening. I was immediately given a huge steroid shot as well as put on a daily dose of steroids and an antimalarial drug used as the first line of medications for Lupus.

For those unfamiliar with Lupus treatments- there aren’t very many options, which is why we are here in front of you today. When we realized that I was allergic to the first drug, I was immediately switched to chemotherapy. We started a small amount but each month as my symptoms continued to rage on, I was put on a higher and higher dose. The amount of steroids grew as well and by the time I was 6 months into treatment, it is very safe to say that I was more sick from the medication than I was the illness with absolutely zero improvement. So now, not only did I have the debilitating symptoms from the lupus itself, but I also threw up daily from the chemo, lost massive chunks of hair every time I stepped in the shower, and I ballooned up from the insane amounts of steroids I was taking daily.

It was absolutely horrible.

One minute you are living your best life. For me? it was a career that I was absolutely passionate about, creating a family, a house and car, bumping up my investments, and traveling. And then?  It was just gone.  I was on FMLA for 3 months through the initial testing because I was too sick to work.  I had short term disability but unfortunately the company fought with me over payment because I didn't actually have a diagnosis.  It took 7 months to get paid for that initial 3 months and in that time frame I lost my job due to the illness, blew through all my savings and investments to help pay for treatments after I lost my insurance and eventually I lost my house and my car.  

No one prepares you for life as a chronically ill person.  You get the diagnosis and start trying to wrap your brain around just the concept of having a long term health issue that has no cure.  I was not prepared for the possibility that my entire world would come crashing down.  No job, no way of working to get insurance because you are too sick but you aren't sick enough to qualify for disability yet. then comes the difficult journey of even affording consistent treatment so that you can HOPEFULLY one day hold down a job again.  

Chronic illness is a never ending cycle of despair for a lot of people.

I had never struggled with depression before and now looking back on the last few years, I can safely say that the only reason that I am still alive is because of a support system that was unwavering during some of the darkest hours I have ever experienced.  Now having come through some of that darkness, I understand that depression and even PTSD is very common in the world of chronic illness.  How could it not be? From simply trying to convince the medical industry that you arent crazy, to the massive amounts of medicine you are often prescribed, and the life changing events that come with illness, ON TOP OF the physical effects the illness has on your body- its not surprising that up to 60% of people with chronic illness experience clinical depression.  

But I didn't know any of that because it isn't talked about.  As a matter of fact, the disease as a whole is hard to research.  There are so few doctors to treat it that you are often herded like cattle into appointments and given your meds before you are ushered on.  You never really get to talk about concerns, or even given a firm understanding of what you are up against.  Part of that is also because the medical industry doesnt have a firm grasp on the disease either. 

So here you are- a newly diagnosed Lupie, and you spend hours upon hours on the internet researching the medicines that you are on and scouring forums that talk about ailments to see if what you are experiencing is normal, or whether you should be concerned about a new symptom.  The entire process is absolutely exhausting.

It has been 2 and a half years since I was diagnosed.  28 months, 25 ER visits, 3 medication changes, and more hours than I can count trying to figure out how to survive when the system has set me up to fail.  I am only just now to a point in my journey where I have found connections that have been able to some what help me get consistent treatment on this journey.  I still cannot work in a traditional sense of the word and have done my best to get creative so that I am not taking money from my family.  I have yet to find an insurance policy that I could afford under that "Affordable Care Act" and because my treatment has been inconsistent due to the fact that I cannot afford it, I don't qualify for disability.

I turn 34 this July and in those 28 months since being diagnosed, I have mostly given up on the idea of having a family, a career, and truth be told there are a lot of days that I have even wondered if I am worthy of feeling the love and intimacy that comes with a relationship.

This disease strips away so much more than just certain bodily functions.  For many, it strips away our sense of self and even more detrimental- it takes away our sense of self-worth.

We need funding.  We need funding for better and cheaper medical options, we need funding so that more research can be published, and we need funding for better education in the medical field.

It is just that simple.  

I turn 34 this year.  

This is not what I expected my life to look like and I hope after hearing my story you can understand why I chose to speak out and be candid about my journey.   I still have hope that one day I will look back on all of this and be able to say I climbed this mountain, and that I fought this beast and lived to tell the tale. I hope to be able to accomplish goals, and I want to feel free to dream about my life and those dreams NOT solely revolve around Lupus, but that I will be healthy enough to feel like I can dream about other things.

I want to live again and not just survive.