From time to time I find that poetry is the richest way to describe certain experiences that accompany living with a chronic illness. One of these experiences is that of the fatigue that comes with systemic lupus.
Invisible Illness, I See You. A Short Story
I Am Not Lazy! I Have an Invisible Illness!
Living with Lupus Seminar
I will be among a number of speakers this coming Saturday, March 17th, who will be speaking about living with lupus. My discussion will specifically be about many of the psychological experiences that people with lupus may encounter and the benefits of psychotherapy. The seminar will be held at Cap21 at 18 west18th street (between 5th and 6th Avenue)in room 605 NYC between 11:30am-3:30am. Anyone interested in attending can register by emailing seminars@sistazreachingout.org. Come out and show your support!
Everyone Gets Tired...But Not Like This
Lupus...some people know what it is, most people don't. People may listen and probably understand when they hear the words, "chronic autoimmune disease" or "there is no cure." However, do people really comprehend what it is like to live with lupus? Part of the struggle of living with lupus is making what the experience of living with lupus is clear to others, such as partners, family, and employers. Perhaps others have little difficulty grasping the seriousness of organ involvement, or the tangibility of skin damage; however what do others think about two of the most common lupus symptoms: fatigue and joint pain?
Most people living with lupus are diagnosed during childbearing years...in their prime where they want to be active and have jobs. Typically people living with lupus do not look any different from people who do not have lupus. It is hard to tell that there is an illness present; however, people with lupus may feel chronically exhausted, fatigued, and in a lot of pain. Sometimes the fatigue is so great that it is a tremendous effort to walk from one's couch to the bathroom or it is difficult to think clearly. People without lupus have no way to know how a person living with lupus feels, unless it is communicated to them--this can be frustrating!
With many other chronic illnesses, it is obvious that the person is suffering, but with lupus this is not always the case. Imagine a young, seemingly healthy 30 something year old woman who has a full time job that she really enjoys. This woman also lives with lupus. She has been feeling ok for awhile but for the last two weeks her joints have been hurting greatly and she feels exhausted. She wants to take a few days off and rest but is afraid of what her boss might think. Thoughts of what her boss could be thinking run through her mind such as, "she doesn't look sick" or "she wants to go home because she is tired...so what? Everyone gets tired." This woman who suffers from this extreme fatigue may feel that her symptoms are illegitimate or may feel ashamed to ask for time off because of them. She may or may not speak to her boss. She may choose not to speak to her boss and continue to suffer, contributing to feeling even more exhausted at the end of the day. On the other hand, she may decide to speak to her boss and feel ashamed or frustrated at her boss' lack of understanding and dismissal of her pain, which may deter her from speaking up again. The outcomes of these options seem quite grim; however there is another scenario. In an act of self-care, this woman can speak to her employer and if her employer does not understand, she can provide her employer with some educational literature, and if the employer still does not understand, she can remind the employer that according to the Americans with Disabilities Act, employers are required to make reasonable accommodations to permit people with disabilities to be employed. Hopefully this woman and the employer can then work something out.
There are many practical solutions to scenarios such as the one described above. However, the more significant issue is how this young lady must feel having to justify her symptoms...her experience...the fatigue that is very real to her but which she may believe that she has to prove. People may think, "everyone gets tired" but most people have no idea just how debilitating lupus fatigue can be. It can be a challenge for those living with lupus to shed any feelings of embarrassment or shame regarding their fatigue or pain, and to boldly request their needs. All people want to be understood by others, lupus or no lupus. People living with lupus are constantly learning the they need to speak up to have their experiences of exhaustion and pain fully understood. It is not always easy, especially when others do not seem to understand and some may want to give up. Hopefully someone will remind that lupus fatigue is a legitimate experience and that having special needs or requests is justified! I hope I just reminded you to take care of yourself as best as you can.
Most people know very little about lupus and autoimmune diseases in general. The millions of people living with these illnesses need advocates. Get involved! Donate to research to help find a cure, or help spread the word and educate the general public.
Most people living with lupus are diagnosed during childbearing years...in their prime where they want to be active and have jobs. Typically people living with lupus do not look any different from people who do not have lupus. It is hard to tell that there is an illness present; however, people with lupus may feel chronically exhausted, fatigued, and in a lot of pain. Sometimes the fatigue is so great that it is a tremendous effort to walk from one's couch to the bathroom or it is difficult to think clearly. People without lupus have no way to know how a person living with lupus feels, unless it is communicated to them--this can be frustrating!
With many other chronic illnesses, it is obvious that the person is suffering, but with lupus this is not always the case. Imagine a young, seemingly healthy 30 something year old woman who has a full time job that she really enjoys. This woman also lives with lupus. She has been feeling ok for awhile but for the last two weeks her joints have been hurting greatly and she feels exhausted. She wants to take a few days off and rest but is afraid of what her boss might think. Thoughts of what her boss could be thinking run through her mind such as, "she doesn't look sick" or "she wants to go home because she is tired...so what? Everyone gets tired." This woman who suffers from this extreme fatigue may feel that her symptoms are illegitimate or may feel ashamed to ask for time off because of them. She may or may not speak to her boss. She may choose not to speak to her boss and continue to suffer, contributing to feeling even more exhausted at the end of the day. On the other hand, she may decide to speak to her boss and feel ashamed or frustrated at her boss' lack of understanding and dismissal of her pain, which may deter her from speaking up again. The outcomes of these options seem quite grim; however there is another scenario. In an act of self-care, this woman can speak to her employer and if her employer does not understand, she can provide her employer with some educational literature, and if the employer still does not understand, she can remind the employer that according to the Americans with Disabilities Act, employers are required to make reasonable accommodations to permit people with disabilities to be employed. Hopefully this woman and the employer can then work something out.
There are many practical solutions to scenarios such as the one described above. However, the more significant issue is how this young lady must feel having to justify her symptoms...her experience...the fatigue that is very real to her but which she may believe that she has to prove. People may think, "everyone gets tired" but most people have no idea just how debilitating lupus fatigue can be. It can be a challenge for those living with lupus to shed any feelings of embarrassment or shame regarding their fatigue or pain, and to boldly request their needs. All people want to be understood by others, lupus or no lupus. People living with lupus are constantly learning the they need to speak up to have their experiences of exhaustion and pain fully understood. It is not always easy, especially when others do not seem to understand and some may want to give up. Hopefully someone will remind that lupus fatigue is a legitimate experience and that having special needs or requests is justified! I hope I just reminded you to take care of yourself as best as you can.
Most people know very little about lupus and autoimmune diseases in general. The millions of people living with these illnesses need advocates. Get involved! Donate to research to help find a cure, or help spread the word and educate the general public.
Sun-kissed
Oh no...summertime! The sun is hot and burning. It is the season for the beach and sun-bathing. It is the time of the year when most people are really excited. Why would anyone say "oh no?" Well, have you ever met anyone who has been diagnosed with lupus?
Lupus is an autoimmune disease that for unknown reasons causes one's immune system to attack the body's own organs. Any of the body's organs may be affected but most often the joints and skin. According to the Lupus Foundation of America, one half to three fourths of people with lupus have adverse reactions to the sun, which may result in an itchy rash, lesions or sores, and which can aggravate other lupus symptoms, such as joint inflammation and fatigue. This adverse reaction, or photosensitivity as it is called, follows from a complex process where the UV rays, primarily UVB rays activates a particular cellular reaction.
Time to gear up to go outside. Here we go: start with at least SPF 70 on your face and entire body. Don't forget to get the areas between your fingers and your feet. Grab that large sombrero-like hat, and find that loose-fitting long-sleeved shirt that you are praying you will not sweat through. You think I am joking? Nope. This is what people who live with lupus have to deal with when the sun is high and mighty, unless they are feeling risky on a certain day, and trust me there are many people who might be feeling risky. And even sometimes one may take all the precautionary steps and they get home at night and--oh darn there is that itching and burning red rashy thing on the little part of my wrist that I did not cover, or maybe even on parts of the body that were covered. Yes this is more than annoying and sometimes the frustration is enough to make one say, "hey I love the feeling of the sun on me and I am going to tan in the middle of the day" or maybe even less extreme, "oh so I forgot to spread the sunscreen on today, no big deal." Sometimes people may just want to forget that they have to deal with this annoying chronic illness and want to enjoy the sun like everyone else.
Initially when one is diagnosed with a chronic illness there is an element of denial. Eventually, most people who have been living with the illness for a while come to accept the changes that have come with the disease. However it is not always so black and white; even people coping with a chronic illness for years may fluctuate between denying the adjustments that their illness requires of them and accepting that they can live a high quality life despite having to deal with a chronic illness. As for lupus, think about it...who should really be sitting in the sun without sunscreen or even with sunscreen if it is midday. We all know about skin cancer and even early age wrinkles. Avoiding direct sunlight does not mean you can never enjoy the sun or the outdoors, but rather you can experience them and well. Options: you can sit and tan at noon for 2 hours and risk a week's worth of suffering or you can cover up, wear a hat, and sit in the sun in the late afternoon and know that the odds of any negative reactions are really low. You can take in all the beautiful surroundings, like the trees or the ocean or the people walking by, and you can feel alive as you observe all the life around you. And if you have lupus, you probably know that sometimes you are still more likely to get tanned faster than everyone else.
You don't need a sun burn, a sun rash, or a sun scar, just get a quick sun-kiss. Allow the sun to kiss your skin and then run away leaving it begging for more. Maybe if the sun is nice and kind to you, you will come back another day and let it kiss you once more. And just like people will treat you the way you allow them to treat you, so will the sun, so protect yourself. At most you will be left with a tiny red mark on your skin; a sign that you were smooching for a little too long. You just have to see this all in a different light... and not U.V.
Lupus is an autoimmune disease that for unknown reasons causes one's immune system to attack the body's own organs. Any of the body's organs may be affected but most often the joints and skin. According to the Lupus Foundation of America, one half to three fourths of people with lupus have adverse reactions to the sun, which may result in an itchy rash, lesions or sores, and which can aggravate other lupus symptoms, such as joint inflammation and fatigue. This adverse reaction, or photosensitivity as it is called, follows from a complex process where the UV rays, primarily UVB rays activates a particular cellular reaction.
Time to gear up to go outside. Here we go: start with at least SPF 70 on your face and entire body. Don't forget to get the areas between your fingers and your feet. Grab that large sombrero-like hat, and find that loose-fitting long-sleeved shirt that you are praying you will not sweat through. You think I am joking? Nope. This is what people who live with lupus have to deal with when the sun is high and mighty, unless they are feeling risky on a certain day, and trust me there are many people who might be feeling risky. And even sometimes one may take all the precautionary steps and they get home at night and--oh darn there is that itching and burning red rashy thing on the little part of my wrist that I did not cover, or maybe even on parts of the body that were covered. Yes this is more than annoying and sometimes the frustration is enough to make one say, "hey I love the feeling of the sun on me and I am going to tan in the middle of the day" or maybe even less extreme, "oh so I forgot to spread the sunscreen on today, no big deal." Sometimes people may just want to forget that they have to deal with this annoying chronic illness and want to enjoy the sun like everyone else.
Initially when one is diagnosed with a chronic illness there is an element of denial. Eventually, most people who have been living with the illness for a while come to accept the changes that have come with the disease. However it is not always so black and white; even people coping with a chronic illness for years may fluctuate between denying the adjustments that their illness requires of them and accepting that they can live a high quality life despite having to deal with a chronic illness. As for lupus, think about it...who should really be sitting in the sun without sunscreen or even with sunscreen if it is midday. We all know about skin cancer and even early age wrinkles. Avoiding direct sunlight does not mean you can never enjoy the sun or the outdoors, but rather you can experience them and well. Options: you can sit and tan at noon for 2 hours and risk a week's worth of suffering or you can cover up, wear a hat, and sit in the sun in the late afternoon and know that the odds of any negative reactions are really low. You can take in all the beautiful surroundings, like the trees or the ocean or the people walking by, and you can feel alive as you observe all the life around you. And if you have lupus, you probably know that sometimes you are still more likely to get tanned faster than everyone else.
You don't need a sun burn, a sun rash, or a sun scar, just get a quick sun-kiss. Allow the sun to kiss your skin and then run away leaving it begging for more. Maybe if the sun is nice and kind to you, you will come back another day and let it kiss you once more. And just like people will treat you the way you allow them to treat you, so will the sun, so protect yourself. At most you will be left with a tiny red mark on your skin; a sign that you were smooching for a little too long. You just have to see this all in a different light... and not U.V.