An open note from JA families to others: What NOT to say….

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I am involved with many online support groups and JA communities. This has been a hot topic lately, and is always a topic of conversation with the newly initiated families.
As we were reeling from the gravity of our children’s diagnoses, the things that were said to us really threw us for a loop.
Admittedly, I was guilty of a few of these in our “before JA” days. Friends and family can often say the wrong things, hurtful things, without even realizing the impact of their words. This list was compiled as a result of our own experiences, and the experiences of other families we have met along our journey. The following is an excerpt from Living With Juvenile Arthritis: A Parent’s Guide, available in just a few short weeks from booksellers everywhere. Permission to reprint is required, but feel free to share with your own friends and family.
Things NOT to Say
 
But (s)he doesn’t look sick.—Autoimmune diseases under the JA umbrella operate on the inside. Their bodies are attacking themselves. Just because a child looks well doesn’t mean he or she is well, or even feels well. Sadly, if these children “looked” sick, they may get a little more understanding and empathy.
 
At least it’s not cancer.—No, but it can be a potentially fatal disease that few understand, and it receives far less research and funding dollars. Some forms of cancer can be cured. Arthritis can only go into remission. There is no cure.
 
Are you sure its arthritis?—Well, yes. That’s why we have been to the hospital/lab/doctor so frequently!
 
Thank goodness your other child is well.—True, for now? In the meantime, I worry every day that things will be the same for the other children in the family, and the non-affected child feels guilty for being well. It’s not a trade-off. I feel horribly for my ill child, period. Other children being well doesn’t change the way I feel about his struggle!
 
I’m sure he’ll grow out of it.—Yes, I’m sure you are, because you haven’t heard the prognosis straight from the doctors, or researched this issue like I have. We can hope for remission, but he will not grow out of it, so please don’t marginalize what he’s going through.
 
Kids don’t get arthritis, it’s just growing pains.—JA is not the same arthritis you get from a sports injury or aging. It’s not an “old people’s” disease. It’s an autoimmune condition that causes their bodies to attack and damage themselves. It’s very painful, but it’s not just growing pains.
 
I could never give my child all that medication, who knows what it will do to him.—I don’t like giving my child serious drugs with possibly dangerous side effects. I hate being the shot giver, and administering medications that cause nausea, headaches, excessive weight gain and increase cancer risks. However, I also hate leaving him untreated in pain with the possibility of permanent damage even more. Please don’t rub it in. It’s hard enough without your incredulity.
 
Why wouldn’t you just use “_____?” (Insert supplement, herb or food here.) So many people have success with that.—Again, I trust my medical team. I don’t mind if you bring something to my attention, but don’t assume it will cure my child, or be angry if we don’t rush to try it. Believe me, any non-drug therapy approved by our doctors that doesn’t interfere with the researched and proven treatments, we are willing to give a shot. Chances are, we’ve tried (and even failed) using “X” months ago.
 
Isn’t (s)he “over” that by now?—No, it’s a chronic illness. We hope for remission, but he will never be “over” it.
 
God doesn’t give you more than you can handle.—Very true, but I don’t think God would put this kind of suffering on a child either. Having JA isn’t about God, although spirituality can be a comfort. Most families find this statement abrasive.
 
Are you sure he isn’t faking/lazy/exaggerating.—Yes, I am. I have been with him at the doctor, I have seen the lab results, and I live with him. You don’t even know the half of it. If you only knew how hard he pushed himself just to be told he is faking/lazy/exaggerating, it would break your heart. Many times it has broken his.
 
You are so lucky to miss so much school. It must be nice to have that much vacation/free time.—Remember that the next time you are home sick with the flu, with all that free time! It’s not fun. These kids miss their friends and want a normal life. Many families have to travel out-of-state to visit their rheumatologist. Seeing a city from inside a hospital or clinic is not a vacation, and missing school because you are too sick to go is not a “break.”
 
I know just how you feel.—Please don’t say that unless you do. You might be able to imagine, but unless you know us well or have it in your own family, probably not. These kids are courageous, and put on a brave face to the world most of the time. Please do show them empathy, but don’t patronize.
 
Why are you so serious? Its just a few aches and pains.—JA can damage organs and stunt growth. It can disfigure and cause blindness, as well as pain. It could even be fatal, and we personally know children who have lost their lives to JA. It’s far more than just aches and pains.
 
He looks great! So the meds worked and everything is fine now. Nothing to worry about, right?—Remember, there is no cure. If you knew how many medications we administer, all with their share of side effects, in order to keep him “looking so good” you would be shocked. We are grateful he is doing so much better, but there is also a price, so yes, we worry!
 WOW. I hardly recognized him, he has changed so much.—Please don’t draw attention to the things we know are happening. Steroids can cause acne and excessive weight gain. The chemo drugs can cause hair loss. Most kids are pretty conscious of the changes, and pointing them out makes them feel that much worse. We know you are shocked. We already saw it in your face. Please don’t say anything and make it worse.

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Comments:

  1. joleneew says:

    I am so glad that I found this information to share with others. Thank you! As a parent of a 22 month old who recently was diagnosed with Polyarticular JIA, I thought I was just being “hyper-sensitive” or “easily agitated” by what I found to be abrasive and inconsiderate comments, a few listed in your blog here. I’m certain most comments were made innocently, but it didn’t feel that way at the time. I do feel that there needs to be SO much more awareness and funding for JIA, as I had never heard of it, or rather paid much attention to it, until my daughter was diagnosed with it last month. I have signed up to do the January marathon in order to solicit donations for The Arthritis Foundation, and have set up a FB page in my daughter’s honor and her fight into remission. I’m certain this is just the beginning for me and I have shared the link to hopefully educate at least my family and friends, in hopes that they will then send it out to theirs, etc. Thank you again for putting this out there for all to become more conscious of what they say. I am truly grateful.

  2. This is excellent – not just for families dealing with JA, but any family that is dealing with a childhood disease or illness. Thank you for sharing it, I passed it on to friends/family on Facebook. We have a 5 yr old who has had JA since at least 18 months. It’s been a struggle already.

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