When people hear about a lupus diagnosis, they don’t often think about what it really costs to have the disease. In fact, many who don’t know much about it think it can be “managed” and don’t really take it very seriously. Those of us who battle it daily know that lupus costs comes in the form of monetary value and quality of life value — we don’t take it for granted at all.
Our society has been programmed to think almost always in terms of money when calculating the cost of how something affects us. But when you are literally fighting for your life, cost takes on a different meaning. For me, the cost of the quality of my life became a top priority. Don’t get me wrong, the cost (as in dollars) are a big factor also because, let’s face it, money is one of the biggest causes of stress in our society — and stress is a huge trigger for pain and hospital stays when it comes to lupus.
Quality of Life
I am known as The Hurricane. I am a force of nature and there is always something happening in my path that is changing minds, hearts, and lives. I spent 17 years in the real estate industry, eight years blogging fashion and bringing small businesses new customers, and five years helping to spread awareness for breast cancer in an effort that I called “Pink with a Purpose.” Now I am screaming at the top of my lungs about lupus awareness.
In the past year alone, my career has gone away, my priorities on fashion have changed, I no longer bring business to others because there are days when I can hardly get out of bed. My breast cancer efforts have now been replaced with administration duties, blogging, and bringing awareness to a disease that I actually live with. While I still believe there needs to be awareness and research on behalf of breast cancer, that cause has plenty of advocates who are actually affected by it and who could do a far better job than I.
I am learning that there is far too little research and awareness for lupus. The very things that I took pride and enjoyment in fell by the wayside as I worked to figure out what this thing called lupus was — what it really meant for me and my family, how to combat it, and how to”manage” it.
The very things I’d spent years building, lupus tore down in less than a year. My diagnosis came in February of this year so I’m not even a full year in, but I had to walk away from my career. This career obviously allowed me the freedom to participate in the other activities I mentioned above. Once I was no longer able to do many of those things, my mental attitude suffered. I often wondered who the new me was. “I was downgraded from a Hurricane to an afternoon thunderstorm,” is what I would tease and say to myself. I had no idea how to replace what my life was with what I had become.
People don’t realize it, but this is a cost that is associated with getting a diagnosis such as lupus. But, eventually I started to realize a “new normal” and now I am working each day to regain my “Hurricane” status while realizing that what my life was is just no longer.
Part of regaining a good quality of life is embracing the changes and working with them to find other ways to make an impact and find happiness. I have finally come to realize that the chapter of my life that included the things I mentioned above is closed, but it does not mean my life is over. This has not been an easy transition but as I grow in the modified normal I am creating, I am finding new joys, new ways to help, and new friends along the way who appreciate the new me they are getting to know. The costs are adding up to good stuff.
It’s hard to talk about the cost of lupus without talking about the financial impact that the disease carries. I would love to ignore this part (because it’s stressful and stress is a trigger) but I would be remiss if I didn’t address it.
When I first started getting sick, I had great insurance. With the insurance, I was still responsible for 20 percent of the bill. During the months that it took them to get me a diagnosis, I saw a large group of what I call the “ists” (short for specialists). In a few short months, between doctor visits and hospital stays, I’d racked up well over $100,000 in medical bills. That did not include the cost of prescriptions — of which there were many.
Before the final diagnosis, it seemed many of the doctors were all too happy to offer me drugs for things with no name. Often, I would not even bother to get the prescriptions filled. Not because I didn’t want to get better but because if the doctor can’t tell you what is wrong with you, what are they medicating? Each of these prescriptions come with a new bill, so to fill them without knowing what they were for could be quite costly.
Once my doctors gave me a name for what I was battling, I was told it was not advisable for me to go back to work. Now I’m out of work, no income, no insurance and the costs are all mine. Insert higher levels of stress because there is no cure for lupus and the medications are what help keep you alive. One of my medications without insurance is $947.46 each month. That’s $12,000 per year before you eat, before you pay for shelter, before you pass go. I was told to file for disability, but that takes time and agencies are notorious for turning most people down for years before it is finally granted.
Fortunately for me, I had some savings and I am resourceful. I researched places I could go to make my money last — where they have truly affordable healthcare, good food, and affordable housing. I also learned how to earn income online to supplement what I have in savings. It is still stressful, but at least I am no longer paying astronomical prices for my medications. I recently purchased a two-month supply of a medication (that would cost me $80 for only one month in the U.S.) for $20 because I was going to be traveling and didn’t want to run out.
I had to leave the country I grew up in, say goodbye to friends and family, and start all over again. So when I talk about the costs of lupus, there are many. This disease has taught me so much more about myself than I ever thought I would learn. The experience and the people who have come to my side have been amazing. So, all in all, while the costs are high, I personally embrace the changes, the lessons, and the costs.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Lupus.