Like many of you, I love chocolate, have a coffee addiction, and lie through my teeth when people ask me how I’m doing. Who wants to tell people, “I know I look fine, but this arthritis is really bugging me” or “my immune system is attacking my intestines and this leads to depression and an intimate knowledge of all bathrooms within a five mile radius?” It also doesn’t seem right to complain when there are people struggling to survive while I’m in remission.
Systemic lupus erythematosus (SLE) is an autoimmune disease. Immune cells cease to recognize certain cells or organ systems as its own, believing them to be a foreign entity that should be attacked. This results in chaos ranging from discomfort to organ failure. It also causes inflammation which can trigger arthritis and several other issues. Doctors are becoming more familiar with autoimmune disorders, which has cut down on the ten year average it took for people to be diagnosed (I was so thankful it took me one). While doctors don’t completely understand why people develop the disease, it’s believed to inflict people with a genetic predisposition and it’s not contagious.
There are positives to having a chronic illness. Don’t get me wrong: If I could choose to pass up some life lessons in exchange for good health, I would choose ignorance and health without hesitating. I don’t get to choose, and I quickly learned that my time would be better spent learning how to best live with the disease rather than wishing for different genetic material. Some of the lessons were harder than others.
True friends are sorted out quickly.
Being young and having a serious illness is an interesting thing. It seems to me that people gain empathy through parallel personal experiences. When my peer group was well under the age of thirty, many of them had not experienced a prolonged illness, personally or with immediate family members. They didn’t know what it was like to be so fatigued they repeat themselves or can’t think. They didn’t know what it was like to literally hurt all over. As a result, they said and did some really insensitive things. Some didn’t tolerate plans being cancelled or understand why I couldn’t participate in certain activities. Those people jumped ship early. The others–the people who had empathy and understood that my need to reschedule was not a reflection of my affection for them–have shown me what true friendship looks like.
Be your own patient advocate.
When I hit my first bad flare up and dropped a lot of weight, the nurse at my general practitioner’s office insisted that I wasn’t eating. I was scolded by a doctor for going online and asking if I could get an ANA and anti-DNA test to rule out autoimmune. She told me it couldn’t possibly be lupus because I didn’t have a malar rash (I’ve had a rheumatologist specializing in systemic lupus inform me that few of his patients develop a malar rash). I took notes documenting my symptoms, kept asking questions, and switched to a doctor who was willing to listen.
People mean well, but they say the darndest things.
I’ve had people tell me they’d rather die than restrict their diet (I’ve had allergies unrelated to lupus since I was a child). One woman told me she wanted whatever I had so she could lose weight. Another told me lupus wasn’t real and I really had something else. I’ve had co-workers follow me into the bathroom after lunch to make sure I wasn’t bulimic. Sometimes I can see their actions are coming from a good place, and other times I’m just stunned by the lack of forethought they put into what comes pouring out of their mouths.
Trying new things is good.
I used to get really frustrated when people would give me advice. Eventually I accepted they mean well and sometimes the advice is solid. I don’t try everything I hear, but some things do help. I’ve found that exercising regularly and avoiding sweets and alcohol help me feel better. I avoid processed foods and work hard to avoid medications. I also realize this doesn’t work for everyone. A patient’s journey is a very personal thing and one treatment does not fit all.
Attitude is everything.
It took me a long time to accept that my illness was a reflection of something my body needed. I’m not saying it’s my fault I’m sick. I’m saying that my body was yelling at me to change my ways. Before my first flare up, I worked all the time. I was stressed out and didn’t even realize it. Stressed out was my baseline state. Lupus forced me to slow down. I’ve also realized that a positive attitude can have an amazing impact. If I feel as though I will get better, I have a much better chance of improving.
Depression and anxiety are married to my disease.
Chronic, long-lasting pain is depressing. Experiencing lupus symptoms creates anxiety because it is hard to know if it’s the beginning of a flare up. Once symptoms are active, it’s difficult to know how long they last. Because my autoimmune impacts my intestines and impacts food absorption, I suspect this also impacts my moods. It’s important to pay attention to my moods because it’s easy to focus only on my health until I’m in the middle of an emotional tailspin.
I may not be able to always see the bright side, and that’s okay. I wrap myself up in a blanket of darkness when the depression hits and wallow for a while. If it lasts, I make a plan with my doctor. When things get easier, I pack every moment I can into a day. Seeing how difficult things can get make the good days brighter.
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Camela Thompson lives with her incredibly supportive husband and strange dog in Seattle, the city where cloud cover and shadows rule. How else is a girl supposed to keep her luminescent (perfectly pasty) complexion? The rain also provides the perfect scapegoat for hiding inside with a laptop, her dog, and a hot cup of tea. Excuses for reclusive behavior get considerably more creative during the summer (she may or may not have a mild sun allergy). Blood, Spirit, and Bone is the second novel in The Hunted series. All the Pretty Bones was her debut novel and the first in The Hunted series.
Camela can be found on her blog, Facebook and Twitter
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My aunt died of Lupus when she was 30. She had raised one son to be 10 and decided that the treatment, (this is back in the 60’s…mostly Prednisone) was almost worse than the illness itself! She lived in Sacramento, Ca, because her husband worked for governor Reagan, but the best Lupus Specialist was in Beverly Hills and he was always ‘too busy’ to drive her. We felt that she lived an unnecessarily early death.. But she chose Christian Science and they don’t believe in medical treatment. It was my first death. She lived with it for 10 years. My entire maternal tree, including me, have collagen-connective-auto-immune disorders like psoriatic arthritis, rheumatoid arthritis, psoriasis, and they are beginning to add illness like Krohn’s or many immune-related illness where the immune system attacks itself. My mom told me there are several variants of Lupus Erythmatosis (sp?) One most aggressive than the other two. Not to minimize, but mom told me that people with the other two variants,if they are compliant, and even more so if they eat well, avoid too much sun, and look at it from a wholistic (more on that in a minute) perpective live very long lives. I know that we don’t want to be put on the planet to learn from our suffering and pass the knowledge on, but with end-stage bipolar at 55 years-of-age…it looks like I am. So I can relate wanting the trade all those life lessons for health. Boy can I!
Ok..about wholistic stuff…..this may not be for you, but in the 40’s, there was a man in the south who was nearly illiterate and only graduated Kindergarten. He was a Baptist Minister by trade. He took naps in the afternoon and his assistant, Gladys, noticed he was talking. He was talking about the health of one of his churchgoers…..but he was using terms a graduate of kindergarten could not have! What they did was read him all the letters of the ill congregants, and the most amazing thing happened! He knew who they were from a sound sleep, and before the letter was read, he begain to prescribe and explain certain things about the body, the colon,, the liver…his big thing was that illness was an ‘incoordination’ of the eliminatory systems which need to work together. And how to remedy that. It was crazy. My mother cured herself of rheumatoid arthritis (sister disease to Lupus E.) using these principles.This is still unheard of. Everybody else injects Enbrel, Humira or other immunosuppressants.
He prescribed a greens heavy Diet, avoidance of some foods, colonics, alkalization, etc. The products for same are still for sale. Edgar Cayce was a nonprofit, who gave 19k free health readings that he could have charged money for. There are a lot of books about him but the best into book is “The Sleeping Prophet” by Thomas Sugrue. If you believe it, then the next thing is to approach the ARE (Association for Research and Enlightenment) has two locations but the best one to get ahold of case studies for Lupus so you can try things is in Virginia Beach. I wish we had known about Edgar Cayce when Aunt Dottie was sick. A Stanford Grad, young mother, writer and mother of one son. So sad. I hope you find some stuff to make your illness not as aggravating or maybe reduce symptoms greatly. Allison b
Thanks so much, Allison! I have read Kevin Todeschi’s work on Edgar Cayce, which was also quite compelling. I’ll do more investigating. The diet I follow sounds close to what was suggested.