When my best friend told me she had been diagnosed with lupus after living with crippling fatigue and a list of other awful symptoms, I was happy for her. Finally they identified the illness that she had been struggling with for years. I assumed she would start treatment and ‘get better’, but I assumed that because I didn’t know anything about lupus.
According to the Lupus Foundation of America website, approximately 1.5 million Americans and at least 5 million people worldwide are living with lupus. Ninety percent of people diagnosed with lupus are women and most people who develop the illness are between 15 and 44. The chronic auto-immune disease can cause a variety of symptoms including extreme fatigue, joint pain, headaches, sensitivity to light and a host of other indications. May is Lupus Awareness Month so I thought it would be a great time to learn a little more about it and ask her to write about her experience. Working with Kristen on this piece really opened my eyes to how the illness can effect an individual and their quality of life. I’m so proud of her for being brave enough to share her story and honored to help her do it.
I have lupus. I don’t usually say it that way. Actually, I don’t usually say it at all but when I do, it’s typically something like, ‘I was diagnosed with lupus.’ Something about calling it a diagnosis makes me feel less like it can define me. Just this month, I shared a post about Lupus Awareness Month on my Facebook page, but I never actually typed ‘I HAVE LUPUS’. Still, I want people to know and I want them to ask me about it. I want them to understand. Sometimes, I just need a little compassion.
The challenge with lupus is that it mimics many other diseases, the symptoms are often vague and inconsistent. It’s an invisible illness that takes years to diagnose, has few treatments and no cure. It doesn’t just appear overnight with a dramatic medical crisis that results in a diagnosis. In my case, lupus slowly began changing my life five years ago and it was so gradual that I didn’t even know it was happening.
For years, I was exhausted all the time. I looked for help with many different doctors, including my primary care doctor, an endocrinologist, a sleep specialist, an allergist, a therapist and a naturopath. Test after test came back ‘normal’, which was a relief in many ways but frustrating. Most had few answers, many were dismissive, and one was downright insulting. Theories included vitamin deficiencies, depression, stress and a personal favorite was the doctor that said, ‘you ARE getting older’ (I was 39 at the time). They had suggestions of lifestyle changes, but nothing worked. I started to believe it was all in my head. Deep down though, I knew it was real. I knew something was wrong and I refused to believe that this would be the quality of my life. That is why I really needed to advocate for myself to get the help I urgently needed.
In desperation, I made an appointment with the nurse practitioner at my primary care doctors office. I brought a list of every symptom and illness I had experienced over the years. I gave her copies of all my blood work, medications I was prescribed and every suggested diagnosis. I explained how the quality of my life had changed dramatically. She threw out everything she knew about me and started over with a new medical history, ordered new blood tests, and referred me to a rheumatologist. Finally someone was listening. The nurse practitioner at the rheumatologist office also took the time to ask the right questions and hear my answers. She ran additional blood work and that’s when it happened. We found the answer. I wasn’t crazy, lazy, or a hypochondriac after all. I had lupus.
There was relief and validation in giving my illness a name and hearing that what I was experiencing was real. But there was also an ugly reality, there is no cure for lupus and for most people it is a mystery. It’s invisible most of the time so I can’t show evidence of a flare up or prove how debilitating my symptoms are. If lupus causes me to cancel plans, miss a deadline, or take a day off from work, I worry that people think I am antisocial, lazy, or irresponsible. How do I explain that I need to protect my health and energy when I don’t really look sick?
I don’t like to talk about having lupus. It feels like I am making excuses for mistakes or failing to complete something. I don’t want to look like I am seeking attention, or sympathy, or looking to get out of responsibilities. I feel selfish when I ask for help.
Of my friends and family know my diagnosis, most still don’t truly get it but they seem to want to understand. I can’t help but think they are tired of trying to understand something they cannot see. It’s hard for them to understand why sometimes I’m fine and can accomplish my “To-Do List” and some days I can’t leave the couch. I worry they think I am making a choice of when to work and when to be lazy. I hate to think they don’t believe me, or they doubt that Lupus really impacts my life as dramatically as I know it does. I am afraid they don’t know how much I need and appreciate them and that I just expect them to take care of me.
By now, I have learned that there are things I can do to help minimize my symptoms or shorten the duration of the flares such as taking medication (several medications) and avoiding triggers like exposure to the UVA/UVB rays from the sun. I do my best to limit stress and avoid certain foods. I’m learning to recognize the signs a flare may be coming to manage the symptoms and working to prevent the flares before they start. All these things have helped but lupus doesn’t go away. I still have muscle aches that keep me up at night, stiff joints in my hands when the weather changes quickly, and skin reactions from the sun and now even from some light bulbs. The redness and rashes that appear mostly on my face are embarrassing and if they become severe, they could leave permanent scars. I always seem to be hotter than everyone around me, except of course when I’m freezing, and my fingers and toes turn blue and go numb. During a flare, I can have trouble focusing and I am less efficient at completing tasks. Day to day tasks that I use to do without much effort take more planning now and sometimes, they don’t get done at all.
Lupus could be quietly damaging my heart, liver or kidneys without me even knowing it. The constant fatigue, no matter how much sleep I get, remains the hardest part. It challenges my ability to balance life priorities without feeling guilty for not doing more. I grieve for the life I had before the fatigue and crippling exhaustion took hold. Sometimes, I can predict when it is coming and plan my schedule accordingly but often it comes out of nowhere and life just must continue without me. Lupus shows no mercy when a flare takes hold on holidays, vacations, a workday full of important meetings, or on the one day off I must get caught up.
Lupus has changed my career, friendships, relationships with my family, and the vision I had for my future. Trying to balance my life priorities stretches my energy so far that something important always seems to get neglected. I fear that I am perceived unreliable to the people I care about and I feel like I am failing myself. I will never have the successes that I worked for or dreamed of years ago. There was a time when I didn’t wish away the hours until I knew I could sleep and when I could enjoy all the wonderful things and people in my life.
I have truly been blessed with a wonderful life that many people would envy but on the bad days it’s hard to be appreciative. I hate that my house is always cluttered and feel guilty for all the things on my ‘To Do When I Feel Better List’ that never get done. I’m afraid my husband is growing tired and frustrated with all he must do to maintain the life we built together with little help from me. I worry that my daughter doesn’t know how important she is to me because I am too tired to listen to her stories or help her with her homework. Most days, I can be more hopeful than I am at this moment and can cope with my illness. When I don’t feel well, I can usually slap a smile on my face and pretend that I am fine. On the days that I can’t, I hide away from the world so no one can see how hard it is for me to keep moving forward.
I understand and appreciate that I am one of the lucky ones. The severity of lupus is different for every patient and the impact for me is considered moderate. I was diagnosed and began treatment early. While it takes the average lupus patient 6 years from first symptom to finally finding the correct diagnosis, I was diagnosed after 3 years.
I believe the day I went to see my doctor with detailed evidence in hand of blood work results, symptoms, and various diagnoses, was the day I saved myself. Two years later, I feel like I have my life back. Lupus challenges me almost every day of my life but knowing what I am fighting against has made all the difference. I know what is important and I truly have everything I need to live a long and happy life.
Reading, Writing and Nursery Rhymes 