Learning to Live (and Love) with Lupus

Learning to live with lupus after ten years. 

I have never publicly announced this before now, so please bear with me because I am feeling a little awkward doing so. (And as much as I hate to admit it, I am a proud and private person.) Well, here it goes (hard swallow): I have lupus. I was diagnosed a little over ten years ago, when my life shifted in a way I can only explain as upside down and inside out. I was going to school full time and playing collegiate volleyball when I started to feel overwhelmingly and inexplicably exhausted. I began to lose a lot of weight. I spent every second of the day in bed sleeping when I wasn’t at volleyball practice or in class. My hip and knee joints started to hurt and I noticed that I could barely make it up a flight of stairs. It felt as though I had sandbags sitting on my chest and my eyelids were as heavy as bricks. My playing time on the court dwindled rapidly and I began skipping class to stay in bed. For months I was a shell of myself. My school doctors said I was most likely “just tired” due to my new collegiate workload. Finally, the trainer for my volleyball team brought me to a specialist in Sacramento and after ceaseless and terrifying medical tests, he determined that I had lupus.

For those unfamiliar, the highly informative website lupus.org states, “lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). 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.”

This was over ten years ago and I still struggle with the reality of having the disease. It’s been a wild ride: the disease has hospitalized me, affected various organs like my heart, kidneys, and lungs, and was responsible for dumping loads of pharmaceutical drugs into my body. I have days filled with frustration, anger, and sadness. And some days I even grieve for my life before lupus. However, there are also good days in which I feel so healthy that I forget lupus resides inside me. Sometimes I live in a place of denial of the disease, but sometimes I recognize the reality. Every day is different.

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May is Lupus Awareness Month and I wanted to address the difficulties that come with this disease but also celebrate that living with lupus does not mean that life needs to be hindered. I have learned heaps about myself – physically, emotionally, and spiritually – by having lupus. It is a difficult disease to understand but I am learning that more people across the globe are affected by lupus in one way or another, which is why I felt led to vocalize my story. May I also warmly suggest learning what you can about it.

If you’re also living with lupus or another autoimmune disorder, please allow me to share a few things I have learned on my journey:

It is ok to rest, to sit things out, to say no. There will be people who do not fully understand what you mean when you say you feel tired, but that’s ok. You do not have to prove anything to them. And if you are a friend to someone who has lupus, encourage them to rest and support them when they decline social invitations due to feeling tired.

Follow up with your doctor. Do not miss appointments. Take your medicine. In all of those things I have slacked, and have ended up paying for it ten-fold.

You are not your disease. From time to time, I have had difficulty understanding this sentiment. I become impatient with my body. But I have learned over these years that I am a strong, able-bodied, and capable woman… even if I do have a few extra autoantibodies.

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+For more information on lupus, please check out Lupus.org

Follow Joanna on Instagram.

Comments

  1. This post had me in tears. Having arthritis and avascular necrosis, I can relate. I’m about to start a new med called Xeljanz to prepare for my year abroad that I will be beginning in July. Lots of love, thank you for the inspiration <3

  2. Thank you for sharing your story Joanna. I know how daunting it feels to open up so publicly. I was diagnosed with alopecia universalis in September last year, and it has been a roller coaster since then. I opened up about my struggles on Facebook about a month ago, and it was s-c-a-r-y to do it. But I got so much encouragement, love and support from my network that it truly blew me away. It proved that most of my fears and the anxiety I felt (and still feel to some degree) about AU was in my head. Autoimmune diseases are so various and hard to pinpoint, and even though my disease is different from yours, I’d like to think that I can relate to your story. Falling ill really gives you perspective and there’s a learning curve to it as well – mentally, physically and spiritually. I hope that you feel strengthened through your honest blog post and that you get to have more days where you don’t think about Lupus at all!
    Many hugs from Finland <3 //Anne

  3. Beautiful and brave post and person! Thank you for your inspiring informative words!!!

  4. Thank you for sharing, Joanna! You are an inspiring woman to both those struggling with lupus and to everyone else. Because struggles come in many different forms and we all have to face them and your attitude towards it is very inspiring. Also thanks for making me aware of this! Best wishes to you.

  5. I know how hard it can be to open the world to a personal struggle with disease and identity formation. At the age of 7 I was diagnosed with Lupus, and have lived a life full of hospital stays and traumatic events including watching my body drastically be manipulated due to asteroid treatment. At the time of my diagnosis, doctors were skeltical over whether I’d live to be 20 years old, yet today, at the age of 23, I am in remission.

    As you mentioned, some days are tougher than others, and the disease has positively and negatively shaped my identity over the years.

    If ever you’d like to chat Lupus or life in general, my email is always open.

    XO B

  6. What a compelling post! I am so glad I stumbled upon this. My mom has lupus; she is now in remission. Educating friends and family about what this feels like is so important. You make such a valid point about people not understanding the overwhelming exhaustion. My mom tells me that many of her friends tend to invalidate her exhaustion and instead preach that exercise will make her feel better! She is very active, but she has also learned to listen to her body and know when to rest. My mom also has joint pain that is related (i think). I found her an awesome salve that has medicinal marijuana in it, and it it works wonders! Thank you for sharing.

  7. I’m truely happy to have read this because I have been living with Lupus myself for ten years too, but it’s not a very well known disease here in France, most people have never heard of it, so it feels nice to know that someone out there understands. Thank you for that.

    All the best

  8. There are 2 books I recommend to patients affected with autoimmune disease. One is called The Immune System Recovery Plan by Dr. Susan Blum MD and the second is The Autoimmune Solution by Dr. Amy Myers MD. Both take a functional medicine approach to healing and address the root causes of the disease process. It’s much more than suppressing symptoms. I have relied on the knowledge in these books to assist my patients in curbing/reversing their autoimmune diseases.
    Wishing you all the best,
    Ola

  9. Thank you for sharing! I have Ulcerative Colitis, also an auto immune disease. It’s nice to know that others can relate to the troubles it causes and that it is a lifelong disease.

  10. Thank you for writing this! I know it was hard to talk so openly about your experience, but it is incredibly helpful to anyone coming to terms with Lupus, whether they have the disease or they have a loved one dealing with this intense disease. Personally, my twin sister has Lupus and it helps me to understand the disease when other people share their stories.

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