Lupus from a Parent’s/Caretaker’s perspective: How to manage and Cope when you have a child that is Chronically Ill
Q: What was your initial reaction to my diagnosis in June 2009?
A: (Father) There was definitely a bit of shock, initially, which was followed up by a little relief because we had been dealing with it (these random symptoms) for over 3 years trying to figure out WHAT you had… Now we knew what it was, it has a label and name...But once the initial relief of finally having an answer dissipates, the reality of the situation and its’ potential severity and ramifications hit you.
Q: Did you know or had you heard of Lupus prior to my diagnosis?
A: (Mother/Father) Yes I had heard of it vaguely, and I (father) knew someone who had it through a friend (at a distance), but had never realized all it entailed, because I had not been touched personally by it, until your diagnosis.
Q: What did you do to educate yourself about Lupus?
A; (Father) “The Internet, thank god for the Internet!” The Internet is such a new resource for my generation and what a tremendous aid it was to help us understand and find out more about Lupus and what it entails. We also attended a seminar at NYU to learn more and hear what others who were living with the disease were able to manage and deal with their highly unique and individual case of Lupus, as no two cases are alike.
Q: What was your biggest concern/fear upon finding out and researching about Lupus?
A: (father) Your future and the unknowns that come with an illness as illusive and mysterious as Lupus… Also, I (mother) recall your rheumatologist saying that he was going to give you some medication to help better your quality of life, and those words have stayed with me since that day, because it was not until your Lupus started to flare and you were dealing with some more serious complications of it that I realized what he meant by “quality of life.”
Q: What is it like to care and be considered a “caretaker” for your child?
A: (father) It’s someone I love so it wouldn’t matter if they were older, younger a parent, child, sibling, wife, etc. You take care of the ones you love, I don’t consider it being a care taker, It’s more of being a parent, and loving your child unconditionally and wanting what’s best for them.
Q: How, as a caretaker and parent of a daughter who is chronically ill, does Lupus affect your daily life, activities etc.?
A: (father) It makes you manage your time better… You learn to work around appointments, reschedule your work schedule and you learn how to prioritize, health comes first, always. (mother) Everything I do and every decision I make on a daily basis is made around what I need to do for you and what your needs are that day as they are ever changing, one of the many aspects of Lupus that make it such a hard disease to cope with.
Q: What strategies/how have you learned to manage and cope with Lupus that you would like to share with other parents and caretakers?
A: (father) Patience, and trying to make your life more comfortable and get the best care possible for you now and down the road… I also recommend becoming friends with your local pharmacist (it will pay off!), and learn to take it one day at a time, while trying to keep a positive attitude.
Q: Has there been one moment you recall or has stuck with you, personally, with regards to dealing with Lupus from a mother/father’s perspective?
A: (Mother)- When I had to watch the lady at the wig shop shave your hair, or what was left of it, when you lost it due to a bad flare this past September, it hit me very hard.
(Father)-When Your platelets dropped and I had to come to school to get you and bring you to the hematologist, I had seen the picture of it the morning before but was not prepared to see what it looked like and the severity of it in person, I also was unaware that a low platelet count could cause spontaneous bleeding and that lupus could cause a low platelet count.
Q: You both take/sit in on many of my appointments with both the Rheumatologist, and numerous other specialists… What has this offered you as far as gaining a better understanding about Lupus, and its’ treatments?
A: (Father) It brings more confusion, frustration and a lot of other emotions that you learn kind of come along with this “lupus” territory, but I find that it gives me better input into what kind of medical care exists for lupus patients, and as far as treatment is concerned it is difficult to see your child in pain and have trial and error treatments fail, time and time again, and doctors uncertain as to how to help. It’s hard to understand why they cannot help more, but you have to keep in mind that you are bias, because it is your child who is sick.
Q: What is your opinion on Lupus awareness and advocacy, and what is being done as far as Lupus-specific research?
A: (Father) I don’t think there’s enough advocacy and research whatsoever…It’s hard because it seems that there are these “diseases de jour” that celebrities back and donate to that become “trendy,” and lupus is not one of those glamorous diseases, and because of this it seems to take a back burner. I’d like to see more advocacy and awareness for it, and a better future and quality of life for those living with lupus and their families.
Q: Do you find other people have a hard time understanding what it is like to be a caretaker for someone who is chronically ill/Do you feel as if they do not fully comprehend what it entails?
A: (Father/Mother) Yes, but I think because people do not fully understand lupus, they cannot possibly understand how and what it truly entails, and they do not understand how its’ severity and intensity vary so greatly in each and every person. It’s especially difficult when people downplay the disease, and think it’s “not so bad,” because like any disease, some people have mild forms of it, some moderate and others severe, and I think it’s important the general public gains a better understanding as to how disabling Lupus can truly be.
Q: How has your perspective on life changed or been altered because of Lupus/how is your life different now than it was before I was diagnosed?
A: (Father/Mother) The focus has changed from us as a whole more to you and your health, both short term and daily, to long term, care and our game plan for the future (Which can be difficult because there are so many unknowns)….Also, we do not take things for granted and have learned to value health, and that anyone with a healthy child should know how truly blessed they are.
Q; what do you see(or want to see) for the future of Lupus/advocacy and research:
A: (Father) I would like to see it brought to the forefront, to be on the same level as breast cancer or Lance Armstrong’s live strong campaign, and to bring not only more funding for research to find better and more specific treatments, but also, to make it more well known to the general public. I hope that there is more done in the future, so that Lupus patients can be offered a better quality of life.
Reflecting on the interview: I took a lot away from this interview. I have always had a great relationship with my family and my parents, and they have been nothing but supportive since my diagnosis. However, I had never actually sat down and had a heart to heart, if you will, about such personal issues and feelings with regards to Lupus, and how it impacts them on an every day basis. Usually when we sit down to have a “serious lupus talk” it is regarding an upcoming appointment or what our next move is in forming a game plan to get me the best care possible.
Initially, upon sitting down and preparing my interview questions, I was hoping to offer others that are caretakers and parents of those who are chronically ill, a resource to help them relate and possibly offer them some coping strategies and ways they can further and better support and understand their loved one(s) who are battling this debilitating disease day in and day out… But I think I have taken more away from our little Lupus Pow-wow, as I gained such a deeper understanding of what being a care taker truly entails and to hear them speak of their fears, concerns and opinions on Lupus, and how it affects their daily lives, and ultimately, what lupus looks like from the eyes of a caretaker/parent.
