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.