When Friends Offer ‘Alternative Treatments’ for Your Child’s Health Issues

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When I posted about my son’s double ear infections on Facebook, I think I was looking for a few words of encouragement from a select audience who should have already known these things about my son:

  • He was born with bilateral hearing loss and has abnormally small ear canals;
  • He wears a hearing aid in his left ear; his right ear is currently recovering from surgery (to be aided or not, remains in question);
  • He has had three ear surgeries in his 6 years of life;
  • He had a cholestetoma removed from his right ear during a five-hour surgery last summer;
  • Because of the cholestetoma, ear infections are no small matter for my son;
  • He is currently under the care of an ENT (ear, nose and throat doctor); and,
  • He has sensory integration issues, with oral defensiveness; taking medication causes my son great anxiety.

I believe those same Facebook friends should have also known these key facts about me:

  • I’ve spent the bulk of my time over the past six years caring for my son;
  • I probably know a good deal more about ear health, structure and anatomy than most people;
  • I’ve been feeding my family organic food for 16 years;
  • I am a certified yoga teacher and use alternative medicine whenever possible; and,
  • Because of concerns over returning cholesteatoma and further erosion of his middle ear bones, we have to play it “safe” and use antibiotics.

I was advised on Facebook to try sprinkling garlic on my son’s food and to start buying organic food because it was said to clear up ear infections in the advice-giver’s son.

This comment (well-meaning as it was) made me angry, and then it made me cry.

I realize I’m sensitive right now. This week, my son couldn’t hear out of his right ear and couldn’t wear his left hearing aid, leaving him without access to sound. He couldn’t go to school, and I’ve had to try hard to get him to take an antibiotic. This week, I also drove my fevering son four hours round-trip during 10-below temperatures to see his surgeon, who basically told me there is no good way to know whether cholesteatoma has returned (shy of lifting up his ear in the operating room again for a “second look” or perhaps an MRI in six months). So right now, as much as I’d like an “easy” fix, I can only “wait and see.”

I have no control, and no amount of garlic will change that fact.

Facebook friend, I realize that you were only trying to help with your suggestion of garlic. However, it’s probably best to stick to the basic “tea and sympathy.” Instead, you might simply try offering some empathy. I really take comfort in those Facebook friends who provide comments like these:

  • So sorry you’re dealing with this again.
  • Hugs and prayers.
  • You guys are so brave!
  • Hoping he feels better soon.
  • You’re an awesome mom, Heidi!
  • Stay strong!
  • Praying you both get a good night’s sleep.

And after seeing comments like the above, I know I’m not alone. Maybe all I really need during those times of worry and heightened stress over my son’s fragile health is to know my friends are standing with me.

boy wearing baseball cap jumping near a rock

Follow this journey on Mother Imperfect.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When My Professor Asked If People With Disabilities Would Rather Be Able-Bodied

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As a senior in college graduating this May, I have had the opportunity to take incredible classes on varying topics throughout my four years of school. In one of my courses this semester, I recently participated in an interesting class discussion on a topic I rarely ever discuss in a classroom setting: disability.

In the course of our daily discussion, my professor brought up disability theorist Robert McRuer, who has written several fascinating pieces on ability and on the representation of ability/disability in the media. The piece my professor was discussing is entitled “Compulsory Able-Bodiedness and Queer/Disabled Existence,” and it discusses the ways in which people with disabilities and members of the LGBT community share certain stigmas because both are groups that do not fit into certain social standards of able-bodiedness and heterosexuality, respectively.

In this piece, McRuer discusses what he considers to be one of the major struggles of living as a person with disabilities — the standard of “compulsory able-bodiedness” that upholds able-bodiedness as not only a social standard, but as a social ideal all people should reach. And if they cannot reach it, then they should at least spend their lives trying to reach it. He writes:

“[Our] culture… assumes in advance that we all agree: able-bodied identities, able-bodied perspectives are preferable and what we all, collectively, are aiming for. A system of compulsory able-bodiedness repeatedly demands that people with disabilities embody for others an affirmative answer to the unspoken question, Yes, but in the end, wouldn’t you rather be more like me?”

My professor brought up this point, and then posed the question to the class, asking if they also felt all people with disabilities likely wanted their disabilities to go away, wanted to live a life of able-bodiedness. The answer, to my surprise, was a resounding “yes.”

A student in the class raised his hand and began telling the story of one of his family members, who lives with a disability. He mentioned how many hours of surgery and pain she had been through and concluded she must wish she did not have a disability because of all of that pain and all of the things she cannot do because of her disabilities. Several of my classmates agreed with him.

That was the moment when I decided to raise my hand.

I very rarely discuss my disabilities when I am at school, mostly because it doesn’t ever come up and partially because, admittedly, I do not want my professors and classmates to view or treat me differently. In this conversation, though, I chose to speak out, because I find this opinion — that all or most people with disabilities wish they were able-bodied instead — to be not only widespread, but also potentially very harmful.

My disabilities have brought an incredible amount of pain to my life throughout the past 10 years. Unfortunately, that’s what chronic pain is — painful. Like my classmate’s family member, my disabilities have placed me in the hospital for hours on end and at times have prevented me from doing the things I want or need to be doing. They have cost me a significant amount of time, money and energy. All of these things are true, and it would seem that by virtue of these things being true my disabilities would be something I would resent or hate about myself. It would seem almost obvious that, if given the choice, I would — anyone would — choose to live without pain, without surgeries or medical expenses, and without boundaries.

But this is not what I would choose.

My disabilities are a part of who I am. Because of this, I have learned it is counterproductive to harbor negative feelings about them or wish they would just go away. But, more than that, my disabilities have helped to shape me into who I am. Living with pain has taught me to appreciate moments of happiness that much more; living with the boundaries created by my disabilities has taught me how to break down barriers and fight for the things I want. Without my disabilities, I wouldn’t have my incredible service dog, Simon, in my life, or the hundreds of Facebook friends I’ve met in online “spoonie” groups. Being disabled has taught me about empathy, compassion, advocacy and accessibility, and it has shown me the importance of friendship, love and listening.

My disabilities have brought me pain, this is true. But it is equally true that, in their own way, they have brought me happiness as well. And because of this, I just had to speak out.

I just had to tell my classmates, and anyone else who would listen: Actually no, I wouldn’t rather be like you. I would rather be who I am — disabilities, pain, happiness and all.

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Ariana and her dog.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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18 Things People With Chronic Illness Wish Their Doctors Would Say

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The relationship between a patient and his or her doctor can have a profound impact on the patient’s journey with chronic illness. Doctors’ words matter: an encouraging comment can go a long way towards making a patient feel supported and hopeful — and an insensitive remark can do just the opposite.

We asked our Mighty community with chronic illnesses what they wish their doctors would say to them. These are the remarks that allow a patient to walk out of their doctor’s office feeling confident and, most importantly, heard.

Here’s what they told us:

1. “I will investigate any new symptoms that arise on their own basis and never assume it’s just ‘another symptom’ of your chronic illness.” — Hay Green

2. “It’s not what they say, it’s what they don’t write! Doctors don’t write enough information in their notes about chronic illness conditions. Medical records are too scant on details of how the chronic condition impedes daily life. That has to change.” — Ethan Terry

3. “I know I cannot cure you, but I will try to help you feel better.” — Hannah Waldron

doctor 1

4. “I’d like my daughter’s doctors to say, ‘We only know about this condition from what we have seen in the past. It is what we have studied and treated, and it is the basis for our projections. However, we have yet to see the future, and for you, the possibilities are infinite. Anything is possible.'” — Kathy Milburn

5. “‘I trust that you are able to critically assess information from other patients and the research papers. As such, I believe you know best what your next steps should be and I will do everything I can to support you.’ By the way, this is almost exactly what my doctor does say to me — she is a gem and I am very lucky to have found her.” — Polly Moyer

6. “Where there’s life, there’s hope.” — Cw Mill

doctor 2

7. “‘I know we haven’t improved any of your symptoms yet but we’re going to keep trying until we do.’ I was diagnosed with three autoimmune conditions, given treatment for two and then left to it despite none of my symptoms having been alleviated.” — Melissa Austin

8. “I cannot imagine what you are going though or feeling. You clearly have pain even if no one can see it. We need to find you a peer-to-peer support group to better complete your pain management program.” — Jory Pradjinski

9. “I promise I won’t let you feel like this forever.” — Sabrina Cannella

doctor 3

10. “I had this brilliant idea in the shower the other day… turns out it’s the cure!” — Cynthia Rhodes Alberson

11. “What my specialist said to me was just perfect: ‘No matter what, I’m not giving up on you. We will get through this somehow.’ It was so perfect that I cried.” — Selena Marie Wilson

12. “‘What is something I can do to make your life easier?’ Sometimes doctors get so focused on diagnoses, ‘cures,’ etc., they forget that in the meantime we have to keep living lives the best we can.” — Faith Merryn

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13. “It’s covered by your insurance and there’s no copay.” — Kate Lynn

14. “My doctor actually said this to me: ‘I’m so ready to retire, but, you, I haven’t managed to fix you yet — my biggest regret.’ Best. Doctor. Ever.” — Claire McVeigh

15. “We figured it out and we have a plan.” — Taylor Elizabeth Stacy

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16. “I see you have been working hard and I want you to know this is not your fault.” —  Janae Preston

17. “I believe you. I don’t think you’re exaggerating or looking for drugs.” — Ryan M. Russell

18. “I will not stop until you are better.” — Diane Kelley

doctor 6

If you have chronic illness, what’s one thing you wish your doctor would say? Let us know in the comments.

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When You Pressure Yourself to Be a ‘Success Story’ of Your Illness

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On mornings like this, I find myself floundering. For the second time with this illness, I find myself detached from the outside world. After months of striving to balance an ever-decreasing workload with an ever-increasing symptom load, I stepped back to make my health my number-one priority, something my body no longer deemed a choice. On the one hand, it feels reasonable to wait to return to “the world” once I can shower, prepare food, do therapeutic exercise and otherwise maintain my day-to-day life with manageable symptoms. When I try to perform above my capacity day after day and my symptoms are consistently high, quality of life suffers steeply. I feel pressure to use my time wisely, to do everything within my power to transform this experience of struggle into a patient “success story.”

Connecting with an online community of other “chronnies” (as I’ve started saying) fosters both solace and insanity for me. There are many success stories and endless promises that certain lifestyle changes, combined with acceptance of a new normal, can allow those with illnesses to return to a “semi-normal” life. This gives me hope and useful tools, but also leaves me frustrated that all of my efforts have not yet returned me to this elusive place of sustainable functionality. Some days I find myself frenzied, striving frantically to incorporate as many positive practices as possible. If I do four types of meditation daily, a variety of therapeutic exercises, maintain a consistent eating and sleep schedule, manage my emotions, and check off the boxes next to the list of patient management techniques, then I should get better — so these things say, and so I say to myself. So I practice being a model patient for months, and then for years. And yet here I am.

This is not to say I haven’t improved through symptom management. The books and techniques I’ve found helpful have become my new holy canon and I a devout follower, acting with no little amount of faith in the unseen promise of the holy grail of wellness. But I still face moderate to severe disabling symptoms on a daily basis. So I ask myself, what am I doing wrong?

Perhaps I’m overemphasizing the role of the illness in my life. Some literature might suggest I have become over-identified with the role of being sick. If I can change my perspective and adjust my life to build up other identities, my perception of my pain and illness will also adjust so that it is no longer such a strong force in my life, they say. And yet, my bodily capacity has comprehensively redefined my sense of self. It is a force that binds my body in ways that willpower and positive management can’t seem to cure, and that requires immense determination to maintain basic activities of daily living (think getting clean, eating, maintaining a home, etc.).

So still, I find myself running in circles and tying myself in knots as I fight daily to obtain a sustainable life and symptom load. As I grasp for certainties, I realize the fallacy of trying to obtain concrete answers for the situation. I’m struggling to gain control over illness that remains poorly understood in the scientific and lay communities. And my body, which was once taken for granted, is now the target of myriad, often contradictory suggestions that promise a return to “normalcy.” When these fail or fall short, the blame can too often fall back onto the “problem patient,” rather than on the broader lack of understanding and knowledge about the illnesses themselves.

So as I chase myself in circles, striving daily to transform my own illness experience into a “success story,” I wonder where there might be room for a little more compassion and a little less frenzied grasping. Can we, patients and doctors alike, gain a greater sense of control by accepting that this is not a force we can completely control? Can we create a gray space in the medical model for those of us chronic patients who live in the undefined, ungraspable, incurable space between sick and well? Most “success stories” seem to emphasize a patient overcoming or surpassing their role as a patient. Might there be space for a success story of a patient who is simply coming to terms with the bodily limitations of illness and its consequent emotional and social repercussions?

Is there an opportunity for a patient to be deemed “successful” by simply doing their best to adapt, cope and accept their new reality as it is today — not with hopes for a different and more functional future, but rather a growing respect and honoring of the bold endurance and courage it takes to embark on each new day as an unknown journey?

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Alexandra’s home set-up when she has back spasms.

A version of this post first appeared on Alex and Ellen’s T(ALKS)pot.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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22 Respectful Ways to Respond When Someone Uses the R-Word

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How many of us have been in a conversation with someone — a friend or coworker, perhaps, or a new acquaintance — and he or she casually uses the R-word in a derogatory way? It can be a difficult situation to navigate, especially with someone you’re not totally comfortable with. What’s the best way to express how problematic and hurtful that word can be?

We teamed up with Spread the Word to End the Word to ask our Facebook communities how they respond (respectfully) when that happens. These are just some of the great suggestions we received:

1. “Do you think you could use a different word? It’s hurtful to people I love dearly.” — Barb Weber Eltz

2. “You know, that’s really not a respectful word, and it’s not in my vocabulary because it’s very hurtful. I would kindly appreciate it if you wouldn’t use that word.” — Jennifer Colligan-Trevett

3. “Please don’t use that word. I find it very offensive.” — Rachie Firkin

4. “I need you to know it breaks my heart when you say that. You are belittling someone I love every time you use the word.” — Cassie Mareesie

5. “Using that word, in that way, can be hurtful to others. You are kind and creative. Can you find a word that more accurately says what you want but isn’t hurtful?” — Maureen Geurin

6. “You never know how a word like that is going to hit somebody. You never know who has a kid or a sibling or a friend who has that word lobbed at them in the ugliest way. It’s just better not to say it.” — Tiffany Howard

7. “Excuse me, but I’d like to ask you to refrain from saying that word. It certainly does not apply in the situation you are using it. If you are willing, I’d like to share with you how it has progressed from a medical term into the vile, hateful way it is used far too often now. At the least consider what you said and why.” — Rob Rau

8. “Can you please choose another word? I have a child with Down syndrome, and that word is not respectful of him.” — Julie Gerhart Rothholz

9. “It’s really important to be careful about the words we choose to use. In my head, I know you aren’t using that word to hurt me, but that doesn’t change the fact that, in my heart, it does. It would mean a lot to me if you could find different words to express what you are trying to say.” — Gabrielle Leah

10. “There are so many other words in our vocabulary that can be used. There is really no need to use the R-word.” — Sandi Eaglin Cooke

11. “Using that word is a sign of ignorance, and I know you are a well-educated person.” — Jennifer Harris

12. “Please don’t use that word. Have you tried saying ‘ridiculous’ instead?” — Shari J Gary

13. “Did you know I have a sister with special needs? She’s incredible and lights up my life!” — Alexis McCracken

14. “”You may not realize it, but that is no longer a socially acceptable word.”” – Cindy Colwell

15. “I’m autistic, [and] I ask that you don’t use that word around me please. Thank you.” — Arianna Lea Nyswonger

16. “Goodness, we need to find you a better word!” — Barbara Gracey

17. “Hey, that’s not cool.” — Trista McDermott

18. “You may not be aware, but there’s this campaign [called] Spread the Word to End the Word, and I signed the pledge.” — Dawne Trombi Benoit

19. “Were you aware that many people, including me, find that word offensive and inappropriate?” — Kristin Link

20. “Please don’t use that word in my presence. Many things I can deal with. Unfortunately, this one I find offensive. Please and thank you.” — Shawn Baltz

21. “That’s really not a nice word to use.” — Laura Steenerson

22. “Excuse me there, buddy, I couldn’t help overhear just now… you misused a word I don’t think you understand the meaning to, and unfortunately it is such an offensive and derogatory word that most people out of shock shy away and lose the courage to correct your use. You see, out of fear, years ago, some people used that word to classify those ‘other’ people who made them feel uncomfortable. To mark them as being less than. These ‘other’ people are our brothers, sisters, fathers, mothers, our loved ones, and our friends.

“Since I know you wouldn’t stand for me calling the people in your life “less than,” how about we leave that word in the history books where it belongs, huh? Otherwise every time you use it, you’ll be proving that you in fact are less than. And to me, you seem like a good person. What do you say? No more R-word?” — Jim Mallon

Some answers have been edited for brevity and clarity.

Spread the Word to End the Word! You can head here to pledge to stop using the R-word. It’s a step toward creating more accepting attitudes and communities for all people.

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Family Outraged After Boy With Special Needs Sent Home From School in a Diaper

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On February 16 a young student was allegedly sent home on the bus from Mint Valley Elementary school in Longview, Washington, without pants on. The child, who has a learning disability and isn’t being named currently, got home wearing just a backpack, shirt and diaper after he soiled himself at school, KOIN 6 News reported.

Sandy Catt, Longview School District spokeswoman, says the policy for situations like these is not to send children home in diapers without pants on.

“Typical protocol would be that the child would be cleaned up and outfitted with some sort of unisex loaner sweats or something like that,” Catt told KOIN 6 News. “That protocol was not followed, and from a district level we have investigated that.”

Photo of the boy wearing a diaper

The district allegedly communicated with the family about the incident but to what extent is still unclear and the entire situation is under investigation by the school district.

The same school previously made headlines in 2012 for using a padded isolation box in special needs classrooms, The Daily News reported. It was used for four years at Mint Valley as a place for special needs children to de-escalate without harming themselves or others and as a voluntary refuge for children with autism to calm themselves after too much sensory stimulation. It was removed after parents expressed concerns over whether or not the isolation box was being used as a means of punishment and it was eventually removed.

Despite this history, Catt said she doesn’t think Mint Valley staff have any deficiencies when working with special needs children.

“I believe the staff at Mint Valley are very compassionate and have availed themselves to a number of trainings,” Catt told The Daily News. “There have been numerous conversations at the school … and working with the family through that has been important today,” she said.

Get more on the story from the video below: 

 

The Mighty reached out to the Longview School District for comment but have yet to hear back.

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