Create Beautiful DesignsSwollen fingers, achy joints, sensitive nerves, and forgetfulness. Cancelled plans, days spent in bed, hospital visit after hospital visit. All of these things can vaguely describe what it is like to live with a chronic illness. This is something that has affected many people in my life. When I was younger I did not always understand why some days I could not cuddle close with my mom or why squeezing her close while hugging her would hurt her so badly. I did not understand why my best friend was not able to get out of bed some days and was missing so much school.
Both of them were diagnosed with fibromyalgia between the years of me being twelve and thirteen. In the beginning I was terrified. I thought they were terminally ill--not chronically-- and going to die right before my eyes. So I took to the internet to research what was actually going on. Through this research I learned that fibromyalgia is described as “widespread pain with symptoms of fatigue, sleep, memory, and mood issues (Staff).” As well as that it is not the only chronic illness and that in most cases it can be nearly impossible to tell if someone is chronically ill just by looking at them. But what I did not learn, is that them being sick would quickly flip my world upside down. I was tossed into a world that demanded I be much more understanding and patient toward something I may never know the feeling of. I had to learn to not get my hopes up and be less disappointed when plans were cancelled. I had to realize that when my friend would lash out at me it wasn’t because I had done something wrong, but rather that she was frustrated and angry about her disorder. Instead of being hurt by her words, I would ask questions to get her to open up and allow her to vent to me. I also had to understand that when my mother would forget about plans or stories I told her it was not because she did not care, but that her new medicine was messing with her short term memory. So I would write things on sticky notes and remind her daily of events that were happening soon, even if I sounded like a broken record. One important life lesson I have learned is that sometimes a day spent in your pajamas watching movies is better than a day out on the town. I now cherish the simple and small things in life a lot more. My world may have been flipped upside down, but their worlds were tossed, kicked, flipped, and crushed as the disorder progressed. My mother can not do all of the things she wishes she could. Even working too long can cause a flare up that will make her miserable. When her friends ask her to go out, she sometimes has to decline the offer because it simply hurts too much to move. My best friend spent the majority of her senior year bedridden from the fibromyalgia as well as other disorders that showed up. Many of her friends lost contact with her because she wasn’t at school nor was she able to go out and do things. After graduating in 2015, she attended Michigan State University, but soon had to come home because she was just too sick. A year later her condition has not much improved. Doctors tell her that she is making it all up because they cannot pinpoint what exactly is wrong. As fibromyalgia is diagnosed through a process of elimination. Doctor’s will test for a variety of other disorders before they conclude that a person has fibromyalgia (Fibromyalgia). This fact causes many doctors to believe that this disorder is not real. How would you feel if doctors were saying that you were simply faking your pain and invalidating how you feel? What would you do if friends cut off contact with you because you were too sick to hang out? As stated before, fibromyalgia is not the only chronic illness that plagues the people of the world. In fact the Centers for Disease Control and Prevention says, “over 117 million people suffer from one or more forms of chronic illness (Chronic Disease Overview).” Therefore it is unfair to those who suffer to be invalidated of their feelings simply because people do not understand. By educating people on how chronic illness affects social life, education, and relationships, a more understanding society in regard to illness can be created. Education is a key point to a person’s life. How far a person gets in their education can determine their future. Often times one’s education is hindered by their illness. Their pain or other symptoms from their condition causes them to not be able to get out of bed many days. This causes those who suffer to have to be homeschooled or often times drop out of school all together. In her article “Love, Anger, and Guilt: Coping With A Child’s Chronic Illness,” Randi Epstein allows mothers to tell their story. One mother who has a daughter with severe epilepsy stated her daughter’s condition was so extreme that, “‘she couldn’t go to school and had to be home-tutored (Cerra qtd. in Epstein 2).’” There are cases in which students are missing school not because they are sick, but because they are taking care of a sick parent. In a study done by the Joseph Rowntree Foundation, 60 care providers ages 16-25 were interviewed. Half of the younger providers said they had missed school due to not wanting to be away from their parent or their parent did not want them to leave (Children Caring for Sick and Disabled Parents 'risk Lasting Problems as Adults). The absences count against the teens and cause them to miss out on important information. This has caused the creation of resources like the American Association of Caregiving Youth, founded by Connie Siskowski of Palm Beach County, Florida (Berger). The goal of the organization is “for no child in the US to drop out of school because of family caregiving responsibilities (About The American Association of Caregiving Youth).” If more foundations similar to this one were popularized it may be possible to keep more young caregivers in school as well as make schools infinitely more understanding. Missing school not only affects education, but social life. No matter what age a person is, having a social life is important. When an individual, their spouse, child, or parent is diagnosed with a chronic illness, the social life they once had can quickly become practically nonexistent. In an interview I conducted with my mother, Heidi Fonseca, when asked how her fibromyalgia has affected her social life she stated: “It doesn’t so much now, but it used to in the beginning because I didn’t want to go anywhere or do anything. I was mostly tired all the time. The fatigue has been a big part of my fibro as well as the pain and I just wanted to sleep all the time. I didn’t want to do much of anything and if I did do stuff like go to work or anything, I didn’t want to do anything later. I had used up all of my energy. I didn’t have the energy to socialize (Davis).” Having a chronic illness or taking care of someone who is ill can be draining. Depending on the diagnosis, an individual’s illness can affect their motor skills and ability to move and leave the house. These factors can cause people to lose friends because they are not able to fully understand why the person cannot go out and socialize or they just feel the ill person is too far out of the loop. During a radio interview, author Toni Bernhard commented that “one of the toughest challenges was accepting isolation (Learning To Live A Full Life With Chronic Illness),” which was brought forth by her illness. In regard to children and teens who are affected by chronic illness it can be very difficult to keep friends and not feel left out or left behind. Their peers or fellow students can begin to make fun of them for things they cannot control. Julie Gordon is a mother of three, one of her children suffers from spastic quadriparesis--“stiff, yet extremely weak muscles in all four limbs (Epstein)”--and in an article by Randi Epstein she expressed, “‘My kids were fine until their peers started making comments and they became embarrassed (Gordon qtd. In Epstein).’” Children should be taught from a young age to not belittle those who are sick simply because they make look or act different. They should be taught to be understanding and accepting. Though social life can be impacted by illness, personal relationships are greatly affected. Strained relationships are seen in many cases involving chronic illness. In the beginning of her article, “Love, Anger and Guilt: Coping With A child’s Chronic Illness” Randi Epstein states, “When a child is chronically ill, the whole family feels the pain (Epstein).” Being parents of a child with chronic illness can shine light upon how sturdy a relationship is. Couples do not get as much alone time when there is a sick child to take care of (Epstein). Many times one parent will have a difficult time dealing with the situation and drift away from the family causing them to be very distant. They want to be able to protect their child and keep them healthy causing them to feel guilty or angry when they are unable to. The siblings of the ill child do not get as much attention as their brother or sister and can begin to feel neglected (Epstein). This can lead the siblings to act out and purposely get into trouble just for the extra attention. Whether they are an adult, teenager, or just a kid, sufferers of chronic illness begin to blame themselves for their sickness. Thinking this way and placing the blame upon themselves may lead them to become depressed, or cause them to take their anger toward the situation out on those around them, creating even more tension. It is not always bad though. More often than not families become stronger through time as they understand the situation more and learn different ways to cope. In the interview with my mother, I asked her how her illness has affected the relationship she has with her husband, her answer was, “It hasn’t had a negative effect, I believe in the beginning it was difficult because of course neither one of us understood what was going on (Davis).” Then she went on to say, “Ever since we figured things out he’s been very supportive and he gives me my space and he lets me rest. If there’s something I can’t because I don’t feel well then he doesn’t give me a hard time about it. He seems to understand (Davis).” These statements provide a primary example that once people take the time to understand the situation and educate themselves, it gets easier. By looking even deeper into the abyss of chronic illness, I was able to expand my knowledge regarding the topic. The subject of chronic illness, its’ broad overview along with all of the branches, is something that needs to be talked about significantly more. Too many people are uneducated and jump to harsh conclusions about those who are suffering from chronic diseases and disorders. More education can lead to more research on the endless list of disorders and diseases that people are stuck living with. More research can lead to better medications that treat more symptoms or even cures. Talking about chronic illness more openly can allow teachers and school administrators to be more understanding toward the students they teach that may be suffering tor taking care of a family member who is. Speaking openly about the subject may lead to less bullying and judgement by peers. They will be able to understand what is actually wrong and hopefully learn to not pick on someone simply because they are different. People should openly talk about illness and be willing to research their questions. No one should be left in the dark or feel alone. With the creation of more organizations to help those who are chronically ill, those affected will be able to find not only more, but easier coping methods. It is possible that with an increase in research and education my mother and best friend could someday be cured and able to live the lives they had before becoming ill once again. That is the ultimate dream of anyone who is affected by or personally suffers from chronic illness, to live the life they had before. It’s up to the people to join together to find ways to make that possible. So let’s get to it. Works Cited "About The American Association of Caregiving Youth." About. N.p., 2015. Web. 18 May 2016. "About Chronic Disease | Center for Managing Chronic Disease." Center for Managing Chronic Disease. N.p., n.d. Web. 18 May 2016. Bauer, Johann A. "Fibromyalgia: a clear diagnosis is possible." Frontier Perspectives 16.2 (2008): 11+. Opposing Viewpoints in Context. Web. 27 Apr. 2016. Berger, Danielle, CNN. 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