I really love the work I do, but freelancing with a chronic illness is tough. Here's my annual reflection on my journey so far.
An interview with my own mother, on what it's like to be the caregiver to a sick child with chronic illness.
“Now, I don’t want you to worry. Not yet. These results can mean any number of things.” When the doctor starts out with “I don’t want you to worry,” the first thing you do is worry. It has been a year since we got back test results that revealed my son had something wrong...
Going back to school can be stressful enough, let alone if you have a chronic illness or chronic pain condition to manage on top of that. I wanted to help make back to school season less daunting, …
An interview with my own mother, on what it's like to be the caregiver to a sick child with chronic illness.
When you're a teenager living with chronic illness, what can you do to deal with feelings of depression, loneliness and real FOMO?
How to approach homeschooling when you have a child with a chronic illness.
A revealing account of how families adapt to living with a chronically ill child What is it like to live with a child who has a chronic, life-threatening disease? What impact does the illness have on well siblings in the family? Myra Bluebond-Langner suggests that understanding the impact of the illness lies not in identifying deficiencies in the lives of those affected, but in appreciating how family members carry on with their lives in the face of the disease's intrusion. The Private Worlds of Dying Children, Bluebond-Langner's previous book, now considered a classic in the field, explored the world of terminally ill children. In her new book, she turns her attention to the lives of those who live in the shadow of chronic illness: the parents and well siblings of children who have cystic fibrosis. Through a series of narrative portraits, she draws us into the daily lives of nine families of children at different points in the natural history of the illness-from diagnosis through the terminal phase. In these portraits, as family members talk about their experiences in their own words, we see how parents, well siblings, and the ill children themselves struggle, in different ways, to contain the intrusion of the disease into their lives. Bluebond-Langner looks at how parents adjust their priorities and their idea of what constitutes a normal life, how they try to balance the needs of other family members while caring for the ill child, and how they see the future. This context helps us understand how well siblings view the illness and how they relate to their ill sibling and parents. Since the issues raised are not unique to cystic fibrosis but are common to other chronic and life-threatening illnesses, this book will be of interest to all who study, care for, or live with the seriously ill.
You fight for your children when they can't fight for themselves. You hope for them and you stay positive for them, and then run to the bathroom just to cry in the stall where they can't see.
"I’m trying every day to be the best mom I can be."
A new study found that less than 5% of kids and teens who tested positive for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) had previously been diagnosed with the condition. Here’s what to look for if you’re concerned.
"All I'm asking is this."
"Sometimes we need that Mama Bear or Papa Bear to put those claws out."
This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale. Don't worry, this won't cost you any extra! Being a parent is hard, especially in today's world where an innocent picture of your kid eating a graham cracker on Instagram can be bombarded with criticism or "helpful" suggestions. "Isn't your kid too young to be eating graham crackers by himself? He doesn't look any older than six." "Why are you taking pictures instead of watching your kid so he doesn't choke to death?!? You're a horrible parent." "Is that a toy on the ground behind him? Don't you know that a messy house stunts your child's growth?" I may be exaggerating a little, but you get the picture. It doesn't just happen on social media either. Sometimes people mean well, but their comments can be insensitive to say the least. Now, take all of those up-in-your-business, critical, hurtful comments and multiple them by at least 10 and you have an idea of what it's like to be a parent who lives with a chronic illness. I've encountered so many people who think they can "fix" me or tell me how I've messed up my kids and my health. From the lab technician who asked why in the world I would ever have children knowing that I could pass Ehlers Danlos Syndrome on to them, to the “friend” who informed me that I caused my whole family to have EDS by vaccinating my children (um, that’s not how a genetic disorder works…), to the other "friend" who told me that I only had my health conditions because I "wanted" them, I've heard some doozies that have ranged from mildly insensitive to downright hurtful and I can tell you...the mom guilt is real. People think they’re helping but sometimes all they’re doing is hurting. With that in mind, I put together a helpful list of things never to say to a parent with a chronic illness. Some of them are a little tongue in cheek because I think we could all use a chuckle now and then. Also, every single thing on the list has either been said to me or another chronically ill mom I know. I wish I were kidding about that, but I’m not. "You don’t look sick!" This is usually meant as a compliment, but it sure doesn’t feel like it. Many of us have spent our whole lives trying to prove to our friends, families, and even doctors that we’re not just faking it and that there truly is something wrong. Telling us that we don’t look sick makes us feel like you think we’re just faking the whole thing. And believe me, we wish we were! Instead, try saying: You’re looking good today, but how are you feeling? "I know how you feel." Um, no. Unless you also have a debilitating chronic illness, you really don’t. Instead, try saying: I don’t know how you feel, but I’d like to understand better. "Well, I’m tired too." Yeah, I thought I knew what tired felt like too before my chronic fatigue increased in intensity. Believe me, nothing can compare to this level of “tired.” It’s so intense that at times, I can’t even lift my fingers to type on my computer. Instead, try saying: I can’t imagine how you feel, but help me try to understand. "Have you tried going gluten-free? Vitamins? Essential oils?" I’ve found the people who ask these kinds of questions are often trying to get me to buy a product that they sell. Sometimes, they’re genuinely trying to help though, and while I appreciate the thought, it’s not helpful. I spend a lot of my time researching new treatments and possibilities as well as discussing things with my doctors. If there’s something out there that I haven’t tried, it’s for a reason. Instead, try saying: I can tell that you’re working hard to research the best options for your illness. "You need to get out and do more activities with your kids." Mom guilt on its own is bad enough (am I doing too little for my kids? Am I a good enough mom?), but when you throw in a chronic illness, it intensifies significantly. Why would you want to add to that? Do you really think that I wouldn’t love to be able to do more with my kids? Having to tell my kids no because of my chronic illness absolutely tears me up inside. Instead, try saying: You’re doing a good job as a mom. Can I take the kids with me on our next trip to the park? "You did it last week, why can’t you do it today?" Honey, I did something an hour ago that I can’t do right now. Every day with a chronic illness is different and sometimes, it narrows down to being different every hour. My body is very unpredictable, and I hate that more than anyone else. Instead, try saying: Are you up to getting coffee with me today? If not, I understand and in that case, can I bring you a coffee? "At least it’s not cancer!" Oh. my. word. Comparing illnesses doesn’t help anyone. Ever. We all have trials to work through and each one is huge to the person dealing with it. For example, when I was still relatively healthy and had one relatively healthy baby, I thought that was incredibly hard (Example: my baby has an ear infection...this is the worst thing ever!). Now I’m basically disabled and have four kids with varying special needs who will experience more pain and medical issues as they get older. This is hard. But that doesn’t negate how hard it was with just one child. Your perspective changes as your situation does. Instead, try saying: I know it’s hard right now, but I’m here for you. "You look and sound happy on social media so how bad can it be?" Just because I’m in almost constant pain doesn’t mean that I’m never happy. If I waited until I felt good before I was happy, I would be miserable all the time and that’s not a good way to deal with this. Also, I only share things that I want to share on social media which means that you’re probably just seeing my best moments. Would you really want to be friends with me if I did nothing but complain and exude negativity? Instead, try saying: I’m glad to see that you were able to enjoy your day yesterday! "You only have your illness because you think you do." Are you insinuating that I’m faking it and it’s all in my head or are you telling me to be more positive so my chronic illness will just go away? Either way, don’t say this. Seriously. I know people think I’m faking it. I’m going to let you in on a little secret. I am faking it. However, I’m actually faking being as well as I am. I work hard and push through a lot of pain so I can lead as normal a life as possible. I’ve had so many people tell me that I’m faking it that I even doubt myself sometimes. Do you have any idea how crushing that is? Thinking positively can definitely have a good effect on mental and physical well-being, but no matter how positively I think, it won’t heal my Ehlers Danlos Syndrome. I will still have pain, and I will still have defective genes. Instead, try saying: I believe you. Tell me more about your chronic illness. "I could never do what you do." I didn’t think I could ever do this either. I used to read stories about people in situations similar to my current one and thank God that I didn’t have to deal with that because I knew I didn’t have it in me. However, that shows a lack of faith in God, and it turns out that you do what you have to do to survive when you literally don’t have any other choice, and you do it with God’s help. Also, please stop painting me to be this amazing brave person who can power through something that most people couldn’t. Sometimes, I’m barely hanging on and hearing something like this can make me feel like even more of a failure. If you only knew what goes on inside my head and behind the scenes, you would know that I struggle just like everyone else. Instead, try saying: How can I pray for you today? "If you pray and believe, God will heal you." Please don’t turn God into a vending machine. That’s not how He works. I can pray and believe all I want, but if God says no or wait, I am not going to be able to change His answer. Instead, I need to focus on what He is trying to teach me through my chronic illness. Do you remember Paul in the Bible? Remember how he had a “thorn in the flesh” (II Corinthians 12:7) and prayed for God to remove it from him? God didn’t. Instead, He allowed Paul to continue to go through his trial, knowing that it would strengthen his relationship with Christ. Instead, try saying: How can I pray for you today? "I wish I could stay home with my kids and not have to work." When I was 17, I had to quit my first job thanks to my health. I cried for days because I was so crushed that I had to give up a job I loved and because quitting made the reality of my health hit me like a load of bricks. Right now, I’m a substitute at the local library and have to turn down a lot of hours because, after about an hour or two on a job that isn’t even that physically taxing, I’m stumbling around like I’m drunk because my legs aren’t working right anymore and practically gasping in pain. I love, love, love working at the library and had originally hoped to be able to go up to full-time when my kids get older, but now, I’m facing the realization that I will not be able to do that. Not being able to work makes me feel worthless at times. Instead, try saying: Tell me about your hobbies. "It must be nice to be able to park in the handicapped spots." You can have my handicapped placard if you take my disability to go along with it. I’m actually too scared most of the time to use my placard when I need it because people can be mean, judgmental, and forget that not all disabilities are visible. Instead, try saying: Can I help you carry your bag to your car? "You go to the doctor too much." Yeah, I agree. I actually hate going to the doctor, but unfortunately, it’s necessary for my health. If I stop going, bad things will happen. Instead, try saying: Would you like me to come along with you to the doctor sometime so we can have coffee afterward? "God will never give you more than you can handle." You will go through more than you can handle, but God can handle it if you let Him. I can’t handle this, and you saying something like that to me makes me feel like I must be a terrible Christian. Instead, try saying: How can I pray for you? ----------------------------------------------------------------------------------------------------- What not to say to a parent with a chronic illness (and what to say instead) : https://bit.ly/2PPor3x ----------------------------------------------------------------------------------------------------- The absolute best thing you can say to someone with a chronic illness is “I believe you.” Seriously. What do you do when someone just isn’t getting the hint about their insensitive words? Well, you actually have several options to choose from and you can use one or all of them, sometimes on the same person. Oftentimes, I go with a combination of the following. Ignore them. When someone says something hurtful to me about my chronic illness, sometimes, I will just smile and then change the subject. Unfortunately, some people just don’t get the hint so you may have to move on to another strategy if this one doesn’t work. Realize when it’s not worth your energy to argue. We all know a few people like this. They just won’t let it go and there’s pretty much no chance of them ever changing their mind on anything. When you run across someone like that, acknowledge to yourself that arguing with them is not going to help and it will more than likely end up using some of your precious energy. Answer their comment or question with something along the lines of, “I know that we don’t agree on this, so I think it would be best if we talked about something else.” Then change the subject and if they bring it up again, use one of the other strategies to deal with them. Set clear boundaries. It’s okay to tell someone that you do not want to talk about your chronic illness with them and that it’s off-limits. Once you’ve let them know that, stick to it because just like a toddler, if you give in once, they’ll think it’s okay to do it forever. Alternatively, you could also send them a link to a website that you know had reputable information about your specific chronic illness and tell them that you would love to discuss their suggestions and thoughts about your condition after they’ve read about it. Know when it’s time to cut ties. If someone is intentionally hurtful or just won’t let up with the insensitive comments and questions, it may be time to cut ties or at least limit interactions. You can unfollow them on social media (sometimes you can do this without deleting them from your friends list/followers so they won’t even know), cut down on social interactions, “miss” their phone calls (caller ID really does come in handy sometimes!), etc. Look for the intention behind the words. This one is hard, but sometimes it’s the best way to avoid hard feelings on either side. Maybe your friend makes insensitive comments about your chronic illness but does it with good intentions. Maybe they truly care and want to help. If that’s the case, gently explain to them that while you appreciate the sentiment, saying and asking things like that is actually hurtful and doesn’t help. Be open and honest with them about ways that they can help encourage you. What tips do you have for dealing with insensitive or rude comments? Subscribe to our mailing list & get 5 free printables!
