In honor of Lupus Awareness Month, I wish to share my story as well as some information of what it is like for me living with Lupus. I was diagnosed with Lupus in March 2011, after years of weird symptoms and at least 6 different doctors and several misdiagnosis I was finally diagnosed; Systemic Lupus Erythematosus (SLE) or Lupus. It took over a year to feel in control of my health and more importantly, feel like myself. I was lucky; I was able to maintain a somewhat healthy status for several years. Then, BAM! I was recently swept off of my feet by a massive flare up. I have an amazing support system, but in all honesty these last several months have been equally emotionally and physically challenging for me. People have asked a lot of questions. Lupus is something that people just don’t understand or have never heard of.
The two questions that I am asked frequently; “What is lupus?” and “What are the symptoms?” I frequently refer people to www.lupus.org; it’s a wonderful site full of great information. But to answer some questions:
What is Lupus?
“Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body. Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).” (http://www.lupus.org/answers/entry/what-is-lupus)
What are the symptoms?
While these do not cover all the symptoms, these are some of the more typical symptoms. Also, not everyone experiences the same symptoms. I have bolded the ones that I have experienced.
- Joint pain and stiffness, with or without swelling
- Muscle aches, pains, or weakness
- Fever with no known cause
- Feeling very tired
- Butterfly-shaped rash across the nose and cheeks
- Other skin rashes
- Unusual weight loss or weight gain
- Anemia (uh-NEE-me-uh) (too few red blood cells)
- Trouble thinking, memory problems, confusion
- Kidney problems with no known cause
- Chest pain when taking a deep breath
- Sun or light sensitivity
- Hair loss
- Purple or pale fingers or toes from cold or stress
Other Symptoms include:
- Blood clots
- Sores in the mouth or nose (usually painless)
- Dizzy spells
- Dry or irritated eyes
What I want people to know about Lupus and what it’s like for me, living with Lupus:
1. There is no cure. There are treatments to manage the symptoms. There’s a wide variety of ways to approach the symptoms, but there is no cure. I read recently (although I don’t remember where) that Lupus patients take an average of 7 medications to manage their symptoms and/or side effects of Lupus. I am far below the average, however as someone who does not like prescription medications – it’s feels like a lot.
2. There are no known causes. Despite many theories, there is no scientifically proven cause. I have heard numerous (and some mildly entertaining) theories; however in the end, it doesn’t change that I have it. Don’t worry it’s not contagious.
3. Flare-ups SUCK. Lupus is a series of highs and lows. The lows are flare-ups. This is when you have a variety of symptoms that take over your body. There is no prediction for how long it will last and/or how long you will feel OK in between. It interrupts your life. I’ve had flare-ups that have lasted about a week and up to 6+ weeks. My most recent lasted 5 weeks, I felt pretty good for a couple of weeks and now I’m about a week in to another. These flare-ups are always ill-timed and ill planned.
4. It hurts. I feel as though I have pretty high threshold for pain, however most days I have pain somewhere. My hands, legs, feet and hips frequently hurt. During a flare up, sometimes the pain feels beyond uncomfortable. Lupus doesn’t stop at the joints though; depending on what is being affected there are other pains to be had.
5. It interrupts your life. Yes, I already said that but it is worth noting more than once. I am a Mom. I don’t stop being a Mom because I have a flare up. However, my 11 year-old has made dinner for us on more than one occasion and I have missed school activities because I had to take a nap at 11 and another at 2. There have been many nights when I would love to go out with friends or spend quality time with my husband but I am just too tired or not feeling well. On top of this, I feel like my calendar is packed with doctor appointments.
6. Lupus makes me blush. Quite literally. Rosy cheeks, commonly known as a butterfly rash. I LOVE BUTTERFLIES. Not this one though. Thank goodness for makeup! On the flip side, I am also anemic, which makes me pale. How’s that for balance?
7. Sometimes I lie about how I am feeling. My kids have seen me at my worst, there’s no need to concern them more than necessary. Also, being asked how I am feeling constantly can feel a bit daunting and it’s just not who I am. In my mind I try to keep the image that I am healthy, happy, and free. I will try to project this as much as possible. However, there are moments when I just feel sad and emotionally exhausted, even depressed. This isn’t who I am and it’s much easier to say, “I’m fine.”
8. There are things that I wish people would just not say. Any statement starting with, “if you would just try….I know you would feel better.” I completely understand that it comes from a place of love and desire to help but it can be borderline insulting, especially if you don’t have Lupus. I’ve surrounded myself with the best professionals that I can find to help me through this; trust me, I am trying to get better. I do not subscribe to conspiracy theories that my doctor is trying to keep me sick. I have met just as many inadequately trained doctors as I have natural healers and vise versa. I still love everyone who has offered a recommendation of some sort; maybe ask what I am doing rather than assuming that there is something that I am not doing.
9. I’ve learned to trust my instincts. I have been to doctors who have told me that I am “just lazy and need to exercise more” or told that I look healthy, so everything must be fine. It creates a lot of self-doubt. More recently I saw a doctor who insisted that because I haven’t had a flare in such a long time, there is no way I actually ever had Lupus. I had to be suffering from depression…and possibly allergies. Really bad allergies. He was right I was depressed, being sick is depressing. Knowing that you are sick and being told you’re not, is even more depressing. The thing about Lupus is that it mimics so many other things; it is one of the ten most frequently misdiagnosed diseases. Furthermore, there isn’t just one test that is given to reach the diagnosis.
10. I’m not ignoring you. Lupus is far more draining than any other life challenges that I have faced. Sometimes I have to be in my own head and re-focus to press forward. Sometimes I HAVE to nap, sometimes it’s more than one nap that I HAVE to have. Sometimes I have to pull myself in to my little world and focus on what is truly important (don’t we all?). If I am not answering my door or taking your phone calls/texts/snapchats/chats/mail/morse code or reaching out to you, it is simply because all I have to offer that day, I am already giving. Honoring my wellness is most important to me.
11. I really am THAT tired. The level of exhaustion that I have felt, I cannot adequately describe. This is coming from someone who frequently ran on 2-4 hours of sleep during my much crazier younger-years. As well as 4-6 hours of sleep during the years in which I worked, went to school, and balanced mommy duties. None of that compares to how tired I am. I am really THAT tired.
12. Lupus is not who I am. Some days are harder than others to find my happiness. However I have fought diligently to become the person I am and to find my happiness. I will not sacrifice that for anything. I have many goals that I will still achieve (except maybe that triathlon this year – maybe next year) and a very full life that I will live! I will still enjoy my hobbies, my friends and my amazing family.
Despite dealing with this, I feel loved and that helps me feel strong. There aren’t enough words to thank my support system. My incredible little family, who constantly remind me to never give up and willingly help me out. My best friend, who has listened to me be the biggest Debbie Downer but still loves me and still treats me as the fun person that I truly am. My parents and siblings for the prayers, phone calls and texts. There is also a small army of people who help me in ways that they don’t even know. I am blessed.