Yesterday, the psychologist at the hospital said, “Don’t you want to be normal?” to my daughter. I wasn’t in the room at the time otherwise I may have bitch slapped him because I think it was insensitive and it quite possibly could have emotionally devastated my child (It didn’t. Thank God). I wasn’t going to blog about it, but I’m sitting here a day later and it’s still bugging me. Here’s why.
My kid is not normal. Normal kids get up every day feeling great, get through a full day of school and homework and then make it to activities at night. They don’t have to worry about keeping a rigid sleep schedule or watch what they eat. They don’t have to cancel plans at a moment’s notice. They don’t carry medication and they’re not comfortable in the emergency room. Normal kids have few worries outside of the crap that comes with being a teenager. Normal kids are lucky, yet they don’t even know they are.
A kid with chronic migraines lives a different life than a normal kid. That’s a fact. There’s not a day that goes by that my daughter does not have a headache. Some days they turn into migraines. Other days they don’t. Since my daughter has abdominal migraines too, she has a lot of nausea and stomach pain. Unlike some migraineurs, she doesn’t see signs that she’s getting one unless she’s had a really stressful day- so usually we’re surprised. Our schedule has to be flexible to accommodate her migraines.
My child isn’t living a normal life, she’s living one that accommodates for her illness. And, as she pointed out to me as she was telling me what the psychologist said, “I am normal. MY normal.” Rosie’s normal can only be hers and it’s different than her normal from a couple of years ago and that’s been a challenge. She’s done an excellent job grasping change, learning to cope and trying to be patient while we find medications that work. She’s also been a trooper with homeschooling because she’d really like to be with her friends. She’d like to live their normal.
That’s what bugs me about the psychologist’s comment. Yes, she’d jump at the chance to be normal. She’d love to go to high school (that’s how the conversation started) but she knows she’d have to be there more than three days a week and right now we’re still getting migraines on at least two days. She’s also a little afraid- scared she may be behind in some classes now that she’s home. Unsure about the pressures of deadlines and tests. She’s not 100% sure what she wants to do next year and that’s fine.
Whatever she decides, I will support and I won’t put up with anyone making comments to her like, “Don’t you want to be normal?” It’s bullshit. Of course she would. She’d love a life pain free. She’d love to wake up every day feeling great and right now she doesn’t have that. She has Rosie’s normal.
Crystal Seaton says
Still completely floored that they would say that to her on so many levels. First of all is everything you wrote. Secondly – homeschooling is very, very normal and very right for lots of families for all types of reasons. That doctor needs a lesson in bedside manners and what constitutes normal. The fact that is was a psychologist makes it much, much worse.
debcb says
You know, I didn’t even deal with the homeschooling issue in this blog because that was another can of worms. I am still seething.
debcb recently posted…What is normal for a kid with migraines?
Barbara says
Still floored at the thought of the question coming from a medical professional, and one who deals with children. Makes me wonder what he/she has said to other patients that don’t have the composure to stand up for themselves.
Barbara recently posted…Plan Ahead for Holiday Baking
debcb says
Yeah, me too. many of these kids have emotional issues so they need to be careful what they say. You never know what may set off depression.
debcb recently posted…The perfect last minute Thanksgiving
Valerie Alkire says
Hey Deb,
I read your post on FB and I came and read your blog post on what that psychologist said at the hospital.
I am so very sorry that your daughter has migraine headaches. I can’t even deal with a regular headache!
I have seen photos of her in dance and she is beautiful!!
Her statement that she said to you about “normal” sounds like a great since of self!!! Great Job in teaching her!!!
I have lived with complex PTSD most of my life and just in the last six years have got it under control and in all my searching to find “Normal” have found……that it’s just a setting on a dryer.
There is no rule book on normal and as far as I know, a rule book on normal has never fallen from the heavens. So your daughter is spot on when she describes it as “Her Normal”…..we all have our own.
What he said is insensitive, but always we have to look at intentions. I am wondering if he meant to be cruel or did he just have a brain fart at the moment. Either way, your daughter still knows her since of self. Her beautiful self!
Please don’t let what this insensitive doctor said have one more moment of your valuable time, emotions or joy.
I say all this with compassion. I also hold your daughter in the light!!!
Warm Regards,
Valerie Stevenson-Alkire
debcb says
Thanks Valerie. I do not think he said it to be cruel. I think he was challenging her to see her mindset. Unfortunately, it was poor world choice and as a psychologist, it’s a word that he shouldn’t use with any of the kids in that clinic because their normal is not the same as other kids. I so appreciate your comments and I’m glad that you’re getting your PTSD under control. Sending you good thoughts.
debcb recently posted…The perfect last minute Thanksgiving
Kate says
I’m so sorry, Deb. (Coming off a weekend of my 40 yr old sister throwing up from 48 hours of her horrible migraines. It’s a HORRIBLE thing to live with- and people that suffer have to learn how to live to their normal, which isn’t easy) So insensitive- so STUPID of him to say that. I hope you called him and told him what a damaging choice of words that was to use with your very strong daughter. I just dealt with educators saying super insensitive comments in a conference about my son who we are assessing for dyslexia. A speech teacher said, ‘And here is yet ANOTHER deficit we have found in Jack’ and ‘he’s not as advanced as he should be at this point’ I was dizzy with anger. I was so mad. This about my child who LOVES homework, works his BUTT off, is obsessed about Abraham Lincoln- wants to learn and read anything he can about Presidents. Seriously? Because he ‘learns’ differently? It rolled so naturally off her tongue that it was jaw dropping. Not one teacher/educator out of 8 in the room, flinched by her statement. You wonder how some people wander into these professions when they clearly lack sensitivity and compassion. But- with Rosie, those statement will make her stronger and will allow her to find her strength and voice. Those ignorant people stick with you and it makes you stronger in the end. But still…makes you SO angry as a mother that this ignorance comes from an ‘expert’.
debcb says
I think everyone should pause before they open their mouths. Just take a moment and think before they say things. The world would be a better place. Thanks Kate.
debcb recently posted…What is normal for a kid with migraines?
Monica says
Hi there. I’m sorry to hear about your daughter. Has she tried Topamax? I was a daily sufferer myself and it took years and so many failed attempts with other meds. But taking Topamax daily has been a saving grace for me. My two cents…for what it’s worth. I wish your daughter a pain free future.
Monica
debcb says
Yes, we just pulled her off Topamax. It’s one of the drugs that cause her to be super blue. Switched to Petadolex.
debcb recently posted…What is normal for a kid with migraines?
Kerin says
I have been following your story because of its familiarity to me, as I struggled with a debilitating chronic illness as well (Lyme). This post especially resonated with me because I heard tons of insensitive and upsetting things from doctors and health professionals. I am incredibly impressed that she identifies and embraces the concept of “My Normal.” It took me a long time to figure that out, and even longer to be comfortable with it. Rosie would have been a great coach for me when I was super sick!
Thank you for telling this story. It is an inside look at what a chronic illness is like, and how it progresses. Unless you’ve experienced it, it’s difficult to understand, but you’re doing an excellent job explaining. I am sending my support and prayers. Keep plugging away with treatments and doctors. You will find the right combination.
debcb says
Thank you for reading and your support. Did you read my post about Invisible Illness week? There are probably some good resources for you there too.
debcb recently posted…What is normal for a kid with migraines?
Kerin says
Thanks, I will read that!
Paula D. says
Deb – What a frank, compelling story of Rosie’s migraine case – and it’s probably only the half of it. So sorry your family ‘normal’ is anything but. Although since migraine affects 1 in 10 school age kids, it’s more normal than people realize.
I lead an online migraine community and website, and we’re getting more content every week that might be of help to you: MigraineAgain.com. We’d be happy to publish Rosie’s story as a Migraine Journey that might help all of the other parents and kids out there be able to cope. if interested, shoot me an email.
Take care,
Paula, editor
MigraineAgain.com
debcb says
Our neurologist was pretty open with our daughter- she explained that in her 8th grade class of 300, there were probably 3 kids just like her. She just didn’t know who they are. Still, it’s hard for other kids to understand that this is a chronic illness that she has to deal with every single day. Thanks for reading and your interest in our story.
debcb recently posted…Dear Santa
Clarissah says
Hi Deb,
Spending some time her on the blog and soaking in all the posts you’ve written, and like everyone this particular post resonates with me, often reminding me that Migraines do not discriminate age, race, or gender. I’m always waking up with migraines, my stubborn behind however don’t’ go treated, I just pop I just pop excedrin migraine every day. My everyday saying is that my migraine has a migraine but I’ve got to keep on pushing along. I’ve discovered that these excruciating tensions result of stress. I hope and pray that your daughter has found some relief. I have an 8 year old daughter, she often complains about her head hurting and stomach pains, when I scheduled an appointment for her to see her peds doctor, the results came back that she had the onset of the flu virus, I called bullshit on that too, since then, she’s been fine, no complains but as a mom I worry. The other ailments consist of her lack of focus in all areas of her life but that’s a post I’d like to write on my blog. I’m new to the blogosphere but noted that I’ve been a reader of many blogs for years, I finally decided to keep an online transparent canvas of our lives on the www. LOL. Thank you for allowing me to comment, I am certainly not finished with visiting, I’m staying around awhile longer to read more post. Have a wonderful day.
debcb says
Thank you for reading and your kind words. I am so sorry that you suffer from migraines and unfortunately they are genetic so your daughter may get them too. For some reason, they tend to get worse around puberty when hormones kick in so keep an eye on her. I wrote a post on abdominal migraines that you may want to read just for reference. I wish you lots of luck in your blogging venture and hope that some of my blogs help you out.
debcb recently posted…A little help please