Lupus Costs You — and Not Just Money

Lupus Costs You —  and Not Just Money
adjusting to life with lupus

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.

The Money

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. 

 

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Kellie "Hurricane" McRae has been dubbed a force of nature. She's the mother of 2 adults who know she is a force to be reckoned with. Diagnosed with Lupus in February 2016 after multiple hospital stays that had her saying her goodbyes to her family & writing her will she became a very vocal advocate. She has openly shared via Periscope what she calls coping while scoping and has helped many who got a fresh diagnosis as well as those who have been battling for a while. Kellie has taken on the idea that food is medicine and shares frequently the chemical ingredients found in some foods and she also shares recipe's for great food. Food is medicine is part of her philosophy. After Lupus forced her to walk away from a 17 year career in Real Estate, she began an online business helping others go from "Coping to Cash flow" because not everyone gets approved for disability and still need to pay bills despite the unpredicatable issues that Lupus causes.

10 comments

  1. Amy says:

    Hi Kellie. You’re article is well written and perfectly illustrates the true costs of lupus. Thank you for sharing your story. Wishing you wellness.

  2. Kallie says:

    I was recently diagnosed with Lupus and am already in search of a warmer climate with more reasonable prices for prescriptions. I’ve checked out several areas in Mexico and Costa Rica. I’ve read good things about Panama but haven’t been there yet. Where did you move to?

    • Kallie, I’m so sorry to hear of your diagnosis, it’s definitely not an easy one. I initially left & went to Nicaragua but as of yesterday I am in Thailand. Be sure to do lots of research not just on the healthcare but if you will be traveling alone, there are safety concerns that you may also want to consider as a solo female traveller. The cost of the prescriptions in Nicaragua were extremely cheap, so was the housing. It’s a beautiful country and if you’re like me, you’re almost always cold so the fact that many of the homes don’t have a/c was fine with me, the fans were more than enough. I have a few friends who have moved to Costa Rica and they seem to love it. Let me know where you land and if I can help with any questions, please let me know. Oh, one other thing I found helpful was joining facebook groups for expats for the areas you are considering and try to find single women and women with healthcare issues, they are wonderful real life resources. All the best!

  3. Aya Castillo says:

    Hi. I’m Aya from the Philippines. I appreciate you writing this article. Very true indeed. This chronic disease really costs a lot. It took me years to go up the corporate ladder (banking industry) & was forced to resign because of my physical condition due to lupus complications. No work = no health insurance. I am now disabled & always in pain. Hospitalized almost every year. Taking a lot of expensive medicines & tests. Not to mention the monthly visits to rheumatologist, nephrologist, neurologist, pulmonologist & so on. I wish all of us luck in this battle. God bless you & I hope you wellness.

    • Hi Aya, I wish I could take this disease and find a cure so we could all go back to living the lives we want. It is a hard transition going from a great position with benefits to it all being gone. I am praying that you will find relief and a year without a hospital stay. I know that can be stressful all by itself, I know each day, there is something new to be learned from this disease, I hope soon they will find a way to relieve the pain and the fatigue. Until then, I wish you low pain days with high energy.

  4. Rowena M. Lacad says:

    Hi, Kellie! How are you doing today? Hope much better than yesterday…

    I am a Filipina and been combating SLE since 2008… what you have written are all true…

    It’s hard to understand sometimes why I need to accumulate such disease. I’m just an ordinary single parent who had been working to sustain the needs of my 5 children then… Since I got this disease, I became jobless, cost me a lot of money to sustain my medication… now, i don’t know how far can I sustain this, financially…

    • Rowena, I am so sorry that this disease happened to you & your family. I have no explanations because I too feel as you do. I was moving along happily in my life and then all of a sudden I was sick. For me, I try to think of the positive things that I can contribute to help others (such as writing this column) and bring awareness. It is a costly disease with doctors, days off work if you can still work and the like. I do wish you more good days than bad ones and I hope you can find some purpose in what has happened. There is a lesson in every thing we experience. All the best.

  5. Julie Kaminsky says:

    Kellie,
    I sympathize with your career loss. I am 62 years old. And Lupus, with fibromyalgia/chronic myofascial pain syndrome cost me my legal career. I struggled for more than 20 years with pain and the other familiar symptoms before any health care provider could put a name to my condition. The worst part is that Lupus is now affecting my brain. That adds humiliation to the cost column for me. I wish all my fellow sufferers good luck with navigating your particular daily struggles. I really do feel your pain.

    • Hi Julie,
      It always breaks my heart that someone can relate to this disease. It really does alter every aspect of your life and many people do not completely realize its affects. I am so sorry that it took your legal career. When I was waiting for a diagnosis, not knowing what was happening to me was the hardest part. 20 years is a long time to wait to hear why your body is rebelling. I’m just glad they finally figured it out and hope that you are having more good days than bad even with it affecting your brain. I appreciate you for sharing your story and wish I could find a cure so we can all stop suffering. All the best to you Julie.

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