Conclusion - Personal Accounts and Narratives

I know this is long... so pick and choose which narratives you want to read if that helps!

After going through all the research and professional publications about how illness impacts the family, in the end possibly the most useful tool for really understanding these issues is to hear it first hand from those experiencing it. First hand accounts, like that of the Wagner family, Dolly, and Yvonne above are sometimes the most poignant and effective ways to really begin to comprehend what people in these situations are dealing with, how they feel, and how they cope. As a result, we will look at a few accounts in relation to the topics we’ve covered, including that of a mother caring for sick children, a sibling of a sick child, a child dealing with the illness of a parent, and lastly a young adult dealing with their own illness.
I have a good family friend from church who recently called my mom looking for some guidance and support. My knew her and her children, but just in the past few weeks has she really begun to understand the severity of her situation. She is a 40 year married woman, with four children ages 4, 6, 9, 10. All of her children have fallen ill with similar conditions, starting at very young ages. Some kids are in more severe situations that the others, but all of them require around the clock care and attention. She was generous enough to take the few minutes she had to conduct an interview with me, which I posted below. I kept things short to respect her time constraints, but I think even her brief answers reveal an enormous amount of information.

1) Can you just briefly explain what it is your children suffer from?

My 4 children suffer from severe to life threatening food allergies as well as asthma and eczema.

2) What would you say are the 3 top "stressors" this has added to your family life (ie. financial costs, time management, marriage struggles) 
Or… What are the 3 major ways this has impacted/changed your family life?

The top 3 stressors that this has added is
1. I can't leave my children with anyone who is not well learned in this area.
2. I always have to plan ahead & can never be spontaneous.
3. I always have to be "on my toes" wherever we are-so therefore not able to fully relax & enjoy situations.
There is also immense financial costs which causes marriage and emotional struggles.

3) How do you feel it has changed your role as a mother? As a wife?
My role as a mother is changed because I am only one person but I have to be everything to all 4 children at all times. I cannot be an effective leader/friend/wife when I'm under immense stress all the time.


4) How do care for yourself amidst caring for everyone else!?
I care for myself specifically by exercising daily.


5) Where/Who do you draw upon for support? Have you been able to find resources for educational, emotional, or even care-giving support? If so, what are they? If not, why has it been difficult?
I draw upon Jesus for support because He's the only one who understands what I'm going through. I have some support from friends/family who are going through this on a smaller scale. I have a wonderful pediatrician and natropath who help me manage the children from the outside. It is difficult for most people to understand the severity of my situation. I have learned to say no to things for the safety and protection of my children. I have become a frantic micro manager!

There were many things that I picked up on through this interview that pertain to what we have been talking about. First, many of the stressors she listed fall in to the categories that apply to families dealing with all types of illnesses. However, the fact that she can not leave her children with a babysitter or anyone who is not trained in caring for her children’s needs is something that is not always considered, and clearly something that adds an enormous amount of strain and pressure to parenthood. Parents always need time away from their kids to relax or spend time with their spouse, yet she is completely held back from doing this because of her kid’s necessary at-home-care and the fear or something happening that only she or her husband would know how to respond to. There is also a general sentiment of extreme stress and tension that seems to define her life from morning to night. I also know that her kids are often awake during the night because they are uncomfortable in their skin, and she looses a great deal of sleep staying up with them and even restraining them to keep them from scratching. A lack of sleep and an every-day abnormally high level of nervous tension makes it hard, as she says in her interview, to fill any other role than mother/caretaker in her life. Her care-taking responsibilities define her schedule and her time, as she says she always has to plan ahead and be prepared. It also keeps her from getting involved in other activities or even feel like she can fulfill her other role as wife. There also seems to be a high level of fear, always worried that one of her kids will have an attack or reaction – keeping her from relaxing or enjoying life at times. I thought it was really interesting to learn that she has found an effective coping mechanism is her exercise routine. It seems exercise would be a great way to get out and release a little bit of the tension she clearly feels. And in her response to support, she clearly has found solace in her faith and beliefs, but also has found it really difficult to find sufficient support otherwise. Even with her friends and family it seems that the support is limited, and largely due to the fact that as she says, it is hard for anyone to genuinely understand what she is going through. This is a general sentiment among care-takers and sufferers, and is why support groups are so important. However, she is a prime example of someone coping with illness in the family that is not typical or extremely common, such as Cancer or Parkinson’s. Therefore, there are not support groups available specifically for care takers of kids with life-threatening allergies! This raises concern, as allergies like this can be just as demanding and emotionally difficult as many other diseases, so how can society build up more resources for family’s like hers who don’t necessary fit the mold?! Lastly, I thought her interview clearly showed that gender roles play a large part in her family dynamic, as it appears she takes on the majority of the responsibilities and therefore stress of care-taking as a woman and mother. Overall, even in her brief answers she revealed so much of what it means to be a mother caring for ill children within the family unit.


Now, to look at a sibling’s reaction, this is an excerpt from a book by Myra Bluebond-Langner called, In the Shadow of Illness. The author interviews and writes about nine families who have a child with Cystic Fibrosis. Below is a serious of quotes from Heather Farrington. The Farrington family is made up two married parents, Vera and Maurice, Heather who is 10, Holly who is 13, and Cody who is 7 and suffering from Cystic Fibrosis. This includes a few things Heather says about how she feels about her own actions toward Cody, how she feels for him, and what she fears due to his illness.

“When I get made at him and I say, ‘You’re a pain,’ and all; I feel sorry for him. And I say I shouldn’t do that because it’s mean to do that to your brother and your sister, especially a brother with cystic fibrosis.”
“When he gets sick I don’t yell at him. I don’t get mad at him. If he does something I get mad, but I don’t say anything to him. I say not to do that because he’s sick. I’m not the same with Holly whe she gets sick. Its only when Cody gets sick. He has cystic fibrosis and I understand how he gets sick.
“My mom treats us the same, but if we have colds at the same time she treats Cody better, because he has cystic fibrosis and his cold might get badder. Mine and Holly’s doesn’t”
“I feel sorry for him when he gets cold and everything… If he gets a cold I think he’ll go to the hospital and I get worried, because if he has to get something done to him that I don’t know of. I get mad because I don’t know whats going on.” (pgs. 45-46).


I thought this was really endearing account of a young girl trying to understand and cope with her brother’s serious case of CF. A few things were definitely consistent with the readings, including that fact that she has taken note of the shifts in her family habits that have occurred due to her brother’s illness. For instance, she sees her mom paying extra attention to him when he gets sick. However, possibly because she is in a teenage stage of development and bit more mature, or possibly because her parents are excellent at balancing their responsibilities, she does not feel neglected or as though her mom pays much more attention to Cody. This is a positive thing, however it is still important for families to continuously evaluate this and talk to siblings about their feelings to make sure this sentiment is not developing without being noticed. It was also interesting that she is more hesitant around her brother, and checks her behavior because she feels badly for him. This sentiment of sympathy is extremely common, and she shows that her role as a big sister has changed because she does not simply act on her feelings or treat him like any other little brother. She edits her reactions to things because of his illness. Lastly, her fear of what is going to happen to him as well as a fear of not having control or being able to help the situation is extremely evident. This is a really hard topic for siblings, especially because with most illnesses it is impossible to tell them exactly what is going to happen to their brother or sister. Therefore, this is again a case where because of her concerns, the Farringtons should make sure to facilitate open communication so they know how she is feeling and can address those feelings in whatever way possible. Overall, Heather seems to be dealing well, but exhibiting many of the emotions and behaviors typical of a healthy sibling.


While it is hard to find personal accounts of children dealing with ill parents, the following youtube video explains a program called Walk with Sally, which aims to provide mentors to children whose parents have cancer. Within it, the children who speak and the mentors who were children when their parents were diagnosed portray many of the feelings and reactions we have heard about.

http://www.youtube.com/watch?v=dkyYZwJM4gU

After watching it, the first young teenage girl Isabel describes the set of emotions she dealt with from sadness to anger, and especially her uncertainty regarding the future of her family. These reactions are extremely common, and absolutely one of the hardest things for children to deal with is not knowing what is going to happen to their parent – and in turn what will happen to them. The older mentors who were young when their parents were diagnosed were especially interesting because their most common sentiment was respect and pride in their parents who fought cancer, which is an emotion that is often overlooked. Especially as children get older, most of them do have an intense admiration for their parents after watching them go fight an illness like cancer, and this is really important because it does strengthen the family bond during a time of crisis. In addition, this mentoring program illustrates that children with sick parents most often feel alone, and having someone who understands what they are going through can make all the difference in the world. Children are important pieces of the family unit, and therefore it is important to recognize that they are affected just as much as everyone else struggling with the illness.


Lastly, the account below is from a girl in her junior year of college who has been chronically ill for the past 7 years. And… that girl is me ☺ I thought I would share a little bit of my personal story to explain why this is such an important and personal topic for me.

“I was on the way home from a school field trip my sophomore year of college when the first headache came on. I had never had headaches before, so it was an unusual feeling. Seven years later, without a single day that has gone by where I did not feel that pain, it is unfortunately a very usual and common feeling. It wasn’t until six years later, years that were defined by pain, increased symptoms, and frantic doctor evaluations trying to figure out was causing it all, that I was finally diagnosed. They discovered a congenital spinal malformation in my cervical spine that was causing great instability and nerve damage in my neck. The diagnosis has been a huge relief – being sick for no known reason was one of the most discouraging and self-doubting experiencing I have ever had. However, it is also a diagnosis of something that I can not fix – something that will be with me forever. My hope, therefore, comes in the fact that the symptoms can go away and I can live with it comfortably and function normally – at least when I get to that point in a long course of treatment.
To go back, the past seven years have been filled with pretty much any and every emotion you can think of. From doubt to anger to loneliness, different periods of my life brought on different struggles and different feelings. For instance, my attendance during my Junior year of highschool was sporadic at best, and I ended up having to take my entire Senior year off. Four years later, I hold back tears every time I drive by my school building, overwhelmed with the horrible sadness that I feel like I have no memories there. I feel like it represents a whole in my development – a stage that I simply missed out on and can never get back. On that note, another huge issue for me dealing with illness has been maintaining friendships. I am at the mercy of my illness – it dictates what I can and cannot do. For a few years, I was bedridden, and so the only friends I had were the ones who were willing to spend their free time sitting with me on the cough watching movies and talking about everything at school I wanted to be filled in on. Unfotunately, that isn’t a huge group of people. You learn quickly who your true friends are, and as a 16 year old, that is a hard emotional lesson to learn. Even now, I have made lifelong friends at Lesley that know exactly how to take care of me, what I need, what I don’t need, and how to support me in every way. They love me despite my circumstances, and even show me that that means they love taking care of me. However, true friends like this still cause me grief because due to my restrictions, I always feel my friendships are 70%-30% when they should be 50%-50%. I can’t give of myself everything I want to – I miss out on their activities or opportunities to be with them all the time due to unpredictable pain spells or symptom episodes, yet they hardly ever miss out on times to hang out or take care of me. The same is true of my mom, who has given up everything to be my full time care giver. In high school it meant taking care of me hand and foot. Now that I have improved, it still means driving 3 hours 3 times a week to take me to doctor appointments, doing my laundry for me, and bringing me back and forth to school as I need it based on how I am feeling. It is hard to feel as though everyone is giving everything to you, and you don’t know if there is ever a way to truly thank them or show your appreciation for all they do. I feel like a burden sometimes, but mostly I just wish I could return all the love and support they show me in the same way. Lastly… as to not go on and on, I think the hardest part of being chronically ill is that it comes to define you life. It dictates the way I make plans (which means always being tentative and making sure others know that I can not always be dependable), the way I eat, the way I sleep, the way I go about my schoolwork, the amount of energy I have to enjoy life, and even the part I am able to play in my relationship with my fiancé. It feels as though there is no part of me or my life that is not affected by this, and therefore at times it can seem as though I am not me – I am just my illness. HOWEVER, there is also great hope! I find peace in my faith, strength in the support of my friends and family, and joy in focusing on everything I can do and the progress I have made. I am extremely capable, and thank God for that every day. It is a choice I have made to wake up and focus on the positive and rely on others when I need to without feeling guilty – it just isn’t always an easy choice. But it’s possible, and I am grateful that I am in the situation I am and for everything I do have. In conclusion, this topic of family and illness is close to my heart because one of the biggest struggles of being an ill family member is the worry I have and sorrow I feel for the all the things my friends and family must deal with as well. I like to think about and learn what they might be feeiling because I want to be able to see things from their perspective. And I think after reading and seeing first hand all of the stressors that arise in situations like mine for those I love, the most important thing to realize is that care givers take on these responsibilities because they love the person and want to care for them. This keeps it from being too discouraging or making me feel too guilty – I know my loved ones wouldn’t put themselves through this if they didn’t want to. And knowing they want to do it is exactly the opposite – encouraging and supportive!”

I hope between the information presented and all these personal accounts that the experience of illness in the family has become more clear and more easily understood. It is a group experience influenced by personal emotions and societal forces – all coming together to create a unique and challenging lifestyle. However, it can also be rewarding and positive, and as a society we need to work to support families to help more and more of them feel these positive results.

To conclude…

1) Did you feel any different or learn anything new after reading the account from the first mother caring for kids with life-threatening allergies?
2) Are there any specific narratives that affected you the most? What was it about that one that hit you?
3) Do you think that my account made you look at me differently? In what way? How do you think societal ideas influence these views?
4) Lastly… what do you think about anything? How did any of this change your thoughts or teach you something about illness in the family?

THANKS FOR LISTENING!


Sources:

Bluebond-Langner, M. (1996). In the Shadow of Illness: Parents and Siblings of the Chronically Ill Child. Princeton New Jersey: Princeton University Press. Accessed from:
http://books.google.com/books?id=1VORNrgo9mYC&dq=in+the+shadow+of+illness&printsec=frontcover&source=bn&hl=en&ei=CtDdS4fNJZLC9QTi27ivBw&sa=X&oi=book_result&ct=result&resnum=4&ved=0CBoQ6AEwAw#v=onepage&q&f=false