It’s difficult to be a mommy. There’s no how-to guide or manual for the kids, and each kid is vastly different. Throw in a chronic illness (or several) on top of it, and there’s a complicated puzzle that can be difficult to figure out. There are many books and tips to help figure out the whole parenting thing, but there’s limited resources for parenting with a chronic illness. Emily Graves is not only a professor with a doctorate degree, but she is also a mommy living with rheumatoid arthritis and other chronic illnesses. She shares her experiences, success stories, and tips in her new book How to Be a Good Mommy When You’re Sick: A Guide to Motherhood with Chronic Illness. I had a chance to interview her about her personal life with chronic illness as well as her new book.
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You can survive this. Gather every tip, trick, support, and resource you can and build capital. Not on only tangible capital but relationships. Relationships are very important and a two way street. Instead of spreading yourself too thin to build quality relationships, invest in those who matter. These are the relationships that will get you through your worst times. The trick is to let people in – or at least for me.
I think the take-away from the diagnosis is to not give up. Tell your doctors no, argue if you need to. Also, if your doctors are not working with you, get a new team. This is part of not giving up. Look for answers until you feel fully informed and on the right medical path for you.
RA has strengthened some relationships and damaged others. Because I have to be selective about how use my time and energy, I have not been able to do as much as I would ideally do. Sometimes I have to sleep and sometimes I can’t do just one more thing. The relationships that I do have I hold dear. I have a wonderful group of friends and family that give me the space I need it and also the help I need when I ask for it. Otherwise, they treat me like a normal, healthy person and I am grateful for all of them.
The relationships that I do have I hold dear. I have a wonderful group of friends and family that give me the space I need it and also the help I need when I ask for it.
I work really hard not let RA affect my career but I would be lying if I said it does not present challenges. The overall picture is a roller coaster going from professor to not being able to work and now I am able to work again. That said, I do have times when I struggle to get caught up and it’s really frustrating. For example, yesterday I had a kidney biopsy and was luckily able to do some work remotely but still got behind. Then, I planned a full schedule for today and only made it in the office 11:00-2:30.
I do plan around times that work for me. Because I am flexible with some of my hours, I work basically everyday so that I can adjust for rest time, doctors, my child…life. I love my job so this is not something dreadful for me. Being a professor is a huge part of who am and something that I am not going to give up.
Be kind to yourself but also maintain realistic expectations. Set goals to live your dream and create a practical and realistic plan to achieve your dream. I think people with chronic illness are some of the toughest people I know. Chronic is going to be part of your life but does not have to consume it. If you don’t work, get a hobby and do something not medical. It can consume you. Also, pamper yourself. I’m not ashamed to say that I go to the spa or get massages. If I can actually feel good for even 10 minutes, I am going to do it and not feel bad. Coming to that was really freeing for me. The best thing you can do is take care of your whole self. This is the only way you will be physically able to do the things you want to do with and for other people.
I really appreciate my current doctors because while they are not robots, they do study the labs and make me feel confident that they know what they are doing. Also, they are very direct so there is no sorting through a fluffy answer to get the facts. To a doctor I would say: Be real people, be direct. Also, people with RA or any chronic illness are a puzzle, and we are all different. If you are not interested in acting like a scientist trying to solve a puzzle, don’t go into internal medicine. We need to think you actually care and (stress on the word and) are competent. This is a recipe for confidence and I don’t know about everyone but if a doctor is going to kick my ass with drugs, I want to be confident that they know what they are doing.
To a doctor I would say: Be real people, be direct. Also, people with RA or any chronic illness are a puzzle, and we are all different. If you are not interested in acting like a scientist trying to solve a puzzle, don’t go into internal medicine. We need to think you actually care and (stress on the word and) are competent.
Right now I am working on a day to day basis with a general overview of where I want to be. My kidneys are currently worse than they were say..6 months ago, hence the biopsy. Right now I feel like I am getting punched in the face by RA but I am stubborn and eternally hopeful, as my mom would say. Honestly, I get mad at RA and that’s probably not the best answer but it is the truth. I always have goals: daily, weekly, monthly goals. And I always have various deadlines here or there. That said, I also have health issue to deal with so I am constantly negotiating with myself. It’s one continuous juggle with a sporadic meltdown here or there. That said, I would not think of doing anything else at this point in my life.
I was really frustrated when I could not work as a professor and had to stay home. I know many people would love to stay home with their child but is not naturally my personality. I love William! That said, I also love working. Anyhow, I was up late one night reading about how to manage the tremendous amount of swelling that I deal with and had a really hard time finding practical resources. I made a list of what I had to figure out on my own and suddenly I had a book idea. I really think there has got to be a way for people with chronic illness to have it all too – family, a career, whatever they aspire to be. I don’t want anyone to give up because of a chronic illness. To me, giving up means RA won. RA will not win.
I think it applies to a wider audience then I first anticipated. I have had someone who was going through chemotherapy for cancer say the book was really beneficial, for example. That surprised me but I was thrilled. Other people who do not have chronic illness have said that it was an eye opener. I think because illness is so personal, most people have a different, personal response.
Simplify and organize everything, your life will be more manageable. I know I say I juggle but I only juggle what is most important to me. I say no a lot.
That is hard because there are so many symptoms. I think being honest with yourself and be proactive about what you can control is important. Obviously, have the physical resources you need like having your house set up to meet your needs but also have, and be ready to accept, the emotional resources. This is the hardest for me. I hate asking for help. That said, I have had to learn and it is not as bad after all. I am still too stubborn to ask overall but when I really need a hug or to cry, I ask now. When I need to scream or vent, I do that too. It is just learning to do it at the appropriate times so that I don’t flip out on someone randomly because I met my maximum 20 minutes ago.
This is hard to answer because I am not certain I would have my son today if I was told getting pregnant with RA would send me into renal failure. William was planned and I did everything medically I could. I am thankful for him so I can’t say I would change it.
Right now my kidneys are on my mind. The kidney business causes so much swelling that I find it intolerable at times. This is a huge challenge. At one point I have 3 liters of fluid pumped out of my stomach. Talk about an extreme makeover! Also, it hurts and it makes me tired. Swelling is something I constantly battle.
I learned that how to accept my limits and that I am resilient. I am fiercely independent and RA makes me revisit my independence on a regular basis. RA has certainly been a growing experience for me.
He knows when I do not feel good and he is my helper. Since William is 5 now he can do a lot. Also, we read a lot together and have movie and pizza nights when I am not feeling good. He asked my mom yesterday if his mom was really sick. I think he gets worried but we talk through it and he is the sweetest boy I know. He is really thoughtful.
I am honest. I say I am not feeling well today, I need your cooperation – we will be a team. That is our thing – being a team. I do not lie to him but do not give him scary details, only that I am not feeling well. It’s obvious when my head is packed in ice from having a migraine.
I do not talk about being sick 99 percent of the time. I have a life to live. This is only one piece and I try to keep it as small as possible. They know I am sick because they have seen me really sick before. Most people who have known me at least 6 months know because it’s obvious. I am honest and straightforward and thank them when they say they will do anything.
RA is not only a disease of the joints. It does not only damage joints, it damages organs also.
Not currently; I have been working on writing for my job as a professor. Most of my articles relate to literacy. I am not sure if I will write another book about chronic illness, it was more difficult than I had imagined because I write all of the time. I will keep it in mind.
I think it made me face my reality. Once you do that, you know what to fight and you can select the right tools to win. If you are not honest with yourself, you will not ever have the right support or guidance from your doctors or the people closest to you. I know I need a team to win this.
Dr. Graves (Ph. D., Texas Tech University) is an education expert, well-published in peer-reviewed journals and textbooks. During pregnancy, she suffered complications due to rheumatoid arthritis (RA) that resulted in kidney failure. After personally experiencing the traumatic change from career woman to a chronically ill, stay-at-home mom, she has actively cultivated strategies to balance her ongoing health battles with her desire to be a great mother and wife while staying professionally active.
Her book, How to Be a Good Mommy When You’re Sick: A Guide to Motherhood with Chronic Illness, was released in early February. Prior to publication, it gained the attention of Library Journal, which reviewed it positively.
Visit her website on Chronic Illness & Motherhood and her FB Page.