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The Most Impressive Thing a Doctor Can Say to Me


At the age of 14, I have been to over a dozen doctors and specialists, and the one thing I find interesting is how they try to impress you. It seems to me like society accepts people who pretend to have all the answers and facts instead of those who are simply honest and humble, saying the words “I don’t know.” Doctors are no exception.

Which brings me to the point: While I understand that doctors want to appear intelligent and well-educated (and they almost always are), when you have been to countless doctors who try to throw every inexplicable reason for your symptoms at you, you begin to wonder how much they know and how much they are faking their knowledge.

I have heard everything from “you’re faking it” to “you need to exercise more” to “it’s just your anxiety.” While, granted, I maybe should exercise more and I do have anxiety, I know for a fact (and I suspect they do too) that these things are not the culprit of my poor health. I speak as an ill person looking for answers when I say the most impressive quality in a doctor for me is honesty.

 

Let’s be real. The person who holds your health and possibly the answers is probably the person you would want to be most honest. That’s why, for me, the most impressive sentence a doctor can say is “I don’t know, but I promise to try to find out.” In this sentence they are admitting they are human, they don’t hold all the answers, and that’s OK. However, they are not crushing your hope because they are promising to find out.

I am not writing this to criticize doctors. I am writing this hoping a doctor will see it or a patient will bring it to a doctor’s attention that they do not have to have all the answers, and being honest is all that people can expect of them.

All I want from doctors is honesty and the simple phrase above would mean the world coming from health professional.

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Thinkstock photo via Design Pics.

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Why I Remain an Optimist Despite My Chronic Illness


I am, and always have been, an eternal optimist. But dealing with chronic debilitating health problems can really shake your resolve to stay positive. I have struggled a lot lately to keep my sense of optimism. There is honestly nothing that can make you feel more hopeless than having a doctor tell you they don’t know why you are hurting and they really can’t help you.

Today I had yet another doctor appointment in an attempt to find the cause (and if I’m lucky, the cure) for a very intensely painful flare-up I have been experiencing. I realize I may have to accept it as yet another part of living with fibromyalgia, but because some of these pain symptoms were new, I thought it was worth exploring.

I started by going to see my gynecologist, as I really think I have endometriosis. She did an ultrasound and found that I have polycystic ovary syndrome (PCOS). On to a specialist, who confirmed PCOS and put me on medicine to treat this.

 

That was two months ago, and I am now four months into the most painful flare-up I have ever experienced. I have been having cramps and stabbing pain in my pelvic area for four months straight, along with hip pain, thigh cramps and lower back pain.

I want to just “push through” the pain, but this pain (unlike my normal fibromyalgia pain) tends to worsen with exercise, and I have been pretty well trapped on my couch for the past four months with no sign of improvement. I got to a breaking point on Sunday after I attempted to attend church. I was feeling so isolated from my friends and thought I would try sitting through a service. But unfortunately sitting has become it’s own special torture, and I was in tears by the end of the hour-long service.

This is my life now, trapped in my own body. I keep remembering I am only 29. I keep running over the possible diagnosis and treatments and realizing I will likely be struggling with these issues for many years to come. PCOS, I’m already being treated for, and this will likely continue until menopause as it is hormone-related. Even a hysterectomy is unlikely to help with PCOS, as taking out all of the organs causes a higher health risks. Most doctors now tend to take out only the uterus with a hysterectomy (that procedure has much lower risks, but would not help with PCOS).

I had also been researching treatment options for endometriosis in case I have that. There is ablation (which my doctor did not recommend as it can cause other problems and doesn’t tend to help endometriosis; plus, as I do not have any signs of endometriosis in my uterus, I don’t think that treatment option really even applies to me). There is laparoscopic surgery to diagnose and remove adhesions if endometriosis is found. My doctor really did not recommend this for me either. She said based on the pain I was experiencing, I might not even have endometriosis. And if I do have it, she said the surgery would at best be a very temporary help. She said the adhesions will likely come back, and the pain of recovering from surgery really outweighed the possible benefits for me (especially as I have a history of not recovering well from surgery.)

The only option left is a shot called Lupron which mimics the effects of menopause on your body, but it can only be used as a temporary fix because going through menopause early can cause a whole slew of other health risks. Doing a hysterectomy is not recommended, because endometriosis is caused by hormones, and taking out the uterus can actually cause the adhesions to have more space to grow and allows the condition to worsen. Basically, neither diagnosis has much likelihood of improving until menopause, a good 20 or so more years for me.

Nothing will make you feel hopeless and defeated faster than a doctor telling you they can’t help you. That you are already taking the best (and only) treatment they can offer you. That there is nothing else they can do.

You see, I am an optimist. But how do you hold out hope when there is no hope? When there is no cure and no treatment to help you? I found myself sitting in the doctor’s office repeating over and over in my head, “You can’t help me.” But it is still so hard to accept, so hard to understand. So many of my friends and family members have told me they “just want me to feel better.” But over and over again I have had to admit I can’t be cured. Again and again, I have come across a new possible diagnosis, I have run the multitude of tests, only to be told that what I have is chronic and permanent. There is nothing that will make you feel defeated faster than knowing you are absolutely out of options.

So how can I reconcile being an optimist with accepting that my condition is chronic? I have learned it is absolutely OK to admit I am sick and can’t be cured. It’s often hard for people to accept this is the case, especially because I am so young. But honestly, accepting my reality is not the same as admitting defeat. When I say I am sick, it doesn’t mean I am a pessimist or giving up!

I will keep being an optimist by choosing to see the rainbow in every storm. I choose to look for the silver lining. It’s not always easy. But I think about the small things. For instance, I’m able to stay home because my husband has a job that pays well enough for him to support us both. I know many people who have had to keep working despite their health problems, and I am able not to work. And I am grateful for that!

I have an amazing dog who is always ready to snuggle up with me on my bad days. I have the comfiest couch known to man. Our air conditioner broke down and we were able to replace it. I have amazing family and friends and the most understanding and supportive husband, each person in my life helping me deal with this illness in the best way they know how.

I have many, many things I can be thankful for even on the worst of days. Some people will say, “If you don’t have your health, you don’t have anything.” But I challenge that statement. I say that as long as you are alive, you can find something to be grateful for no matter how small it seems.

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Thinkstock photo via DeepGreen.

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When You Have an Invisible Illness and You're Judged By Your 'Cover'


The first time I realized the accuracy of the name “invisible illnesses” was in an emergency room.

If you met me that day, you would likely see a young, quiet blonde haired girl with no signs of physical injury. However, the saying “don’t judge a book by its cover” is painfully accurate. I was quiet due to the fact my tonsils had swollen to the size of oranges. This was due to a myalgic encephalomyelitis ravaged immune system that had decided to pack up and go on holiday right as the Epstein-Barr virus decided to set up shop. And when you can’t open your mouth without drooling everywhere, it’s nice to sit and just focus on breathing through the tiny hole in the fire pit of your throat.

Sitting behind me was a middle-aged woman and her husband that had arrived just after me. I may have had an almost completely blocked throat, but my ears were working just fine. Fine enough that I heard the woman turn to her husband as a nurse called my name, and mutter,
“Must be one of those hypochondriacs. She’s too young to be really sick.”

Since then I have heard enough variations of that sentiment to produce a full color spectrum. It has come from every angle more times than I can count. Hearing statements like that used to make me question if I’m sick enough. But being sick at all is sick enough. Feeling restricted in any way due to your illnesses, physical or mental, visible or invisible, traceable or not, is sick enough. I am valid, because I feel this way, and I know this isn’t “normal.” And hearing these things doesn’t make me angry. It makes me sad, and I’ll tell you why.

Woman from the emergency room, I would love it if what you said was true. It doesn’t seem likely that young people can get sick in no visible way. Yet, the most common time for people to get myalgic encephalomyelitis is between their 20s to mid-40s. It’s the same with many invisible conditions, such as fibromyalgia (ages 25-55), lupus (ages 15-40) and Crohn’s disease (20-29).

But I know why you thought that I was “too young.” It’s common for people to think that, because we are part of the group of invisible illnesses. Doctors used to call it the “yuppie flu,” because no one could see it physically, or through medical tests. The sentiment and all varieties of it is still a running theme among both the public and medical field. The problem isn’t with us, it is with the way society views (or doesn’t, in this case) invisible illness.

Times are changing with more people speaking out about mental and physical illness through movements like #MillionsMissing, or awareness months, or even just educating one person. We hold our power in sharing our stories, and educating others around us. We have been bought together, and we are stronger for it. And the more we speak up and normalize our existence, the less people will assume illness must be visible to be valid.

Woman from the emergency room, I hope meeting me changed your perception of what illness looks like. Because when you walked into the emergency department an hour later I saw you really see me. I saw you observe how I was hooked up to an IV, while my nurse took my vitals for what seemed like the hundredth time. You heard the doctor telling him to administer medication in an hour, three hours, six hours. Because you then made eye contact with me, and in that moment, I hope you understood: my illness doesn’t always have to be visible for you to see it’s real.

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Thinkstock Image By: 1Viktoria

What People Wish They Knew When They Started Prednisone


Mighty readers share what they wish they knew about prednisone before they started.

Read the full version of 17 Things People Wish They Knew When They Started Prednisone.

Read the full transcript:

What People Wish They Knew When They Started Prednisone

“It was a quick fix, not long term, and you have to decide if the side effects are worth the benefits, especially with other conditions.”

“I have anxiety and it increases my anxiety for me, so during my prednisone courses I get frequent panic attacks.”

“I wish I knew exactly what moon face was — that my whole face would look super swollen and puffy for a really long time.”

“I wish I knew how serious it was to go up on a dose because it’s so hard to lower the dose. It’s the drug we love to hate.”

“It makes me so ravenously hungry.”

“The weight gain, how it affects your nerves, destroys your bones long term, but nothing else works like it if you need it.”

“I didn’t expect my teeth to get so sensitive or the insomnia that accompanies taking it.”

“I wish they’d shown me the three pages of common side effects before prescribing me it so I could make an informed decision.”

“While many people have terrible side effects it’s not guaranteed you will experience all of them.”

“I wish I knew that I would still be on it 20 years later!”

This video is based on the experience of individuals. Please see a doctor before starting or stopping a medication.

mother holding daughter as she looks out the window

20 Summer Activities to Keep Kids Busy for Moms With Chronic Illness


If you are like me, you have two daughters at home for summer vacation. I don’t know how many times a day I hear “Mommy, I’m bored,” and most of the time I feel like I don’t have the energy to take them anywhere. So I’ve been looking into fun activities for kids of all ages, since mine are 7 and 14, which is a huge difference lately. So here are 20 ideas we came up with of things to do when Mom isn’t up to a lot.

1. Have an A-Z scavenger hunt. Give each child a piece of paper with lines for each letter. Have them go around the house trying to find an item from each letter. Have a hard letter and can’t find anything? Wait until you go somewhere and try to win the game!

2. Let the kids make a fort in the living room, or their room. Let them read a book, or play with toys in their forts. If you can, go in and visit for a while.

 

3. Host an old school movie marathon with movies you watched when you were a kid. Make memories with them that include some of your favorite memories as a child. I know I remember which movies me and my mom watched!

4. Write a summer journal. Have a shared family journal and have each member write something good that happened that day in it.

5. Take a virtual vacation. Pick a place you know nothing about, and let your kids research about the history, the attractions, maybe even order travel brochures if available. Have kids present all the information they learned in a family night.

6. Let your daughters host you a tea party, or your kids can have a picnic inside. Don’t stress if you can’t eat – they will love just having your presence there with them.

7. Gather some family pictures and let your kids make a family photo album or a collage to hang on their bedroom wall. People love to be reminded of who loves them – let them make you a collage!

8. Cut up some old magazines and make an art journal with things you like and that represent you. Make an inspiration collage of things you want to do or things you want to achieve.

9. Make your own greeting cards out of construction paper and have your kids send to loved ones like grandparents, aunts and uncles, family friends. Help them with their writing skills if they are school-aged, and let younger ones just draw a card. People love unexpected mail from loved ones.

10. Each family member pick an animal and do a report on everything unusual and interesting they can find on the animal. Print pictures or show pictures on a computer or phone during your presentation. Try to learn something new and keep everyone interested.

11. Learn how to make slime! Keeps kids interested for hours and doesn’t need a lot of effort or time. Just search slime recipes in your favorite search engine.

12. Look up kids dance videos on YouTube and let your kids dance off some energy trying to learn the dance. Lots of laughs for you and them.

13. Let your kids give you a makeover. I know both my girls love this, it’s perfect for the little ones and the big kids! Let them brush your hair or give you a massage.

14. Put on a fashion show with the kids allowed to get anything out of anyone else’s closet to make the cutest, wackiest, funniest outfits. Give them all special titles for different categories they won.

15. Have a family sleepover in the living room and watch movies as late as you can.

16. Pull out your coloring books (and your kids!) and have a coloring party together.

17. If you are up to it, look into activities at the library. Most libraries have great free programs! Or just visit and check out books for kids to read. Have a contest to see who reads the most over the summer.

18. Have each child pick five toys to donate to someone else. Make it a project to find somewhere to donate (shelters, churches, offer them online). Feeling productive? Have them each find 10 items of clothing that won’t fit them next year or that they don’t like to donate as well.

19. Make a family newspaper. Draw pictures, share memories of things you did that week/month. Include a family calendar and schedule movie or date nights. Let each family member figure out what they are good at and include that may it be drawing, writing, poems, anything creative!

20. Host a read-a-thon and challenge each child to read a certain amount of time per day, or a certain number of books. Make bookmarks together to motivate them to read. Have a small prize like a new book to reward the winner.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Halfpoint.


20 Summer Activities to Keep Kids Busy for Moms With Chronic Illness
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'Chronic Illness Memes' Instagram Uses Animated Characters to Describe Chronic Illness


We all know that watching Disney or other animated movies can be a great way to lift your spirits on a tough day with chronic illness. And as the Instagram account @ChronicIllnessMemes shows, those characters can also be surprisingly perfect at representing what it’s like to be chronically ill.

The account was created in 2015 by Kelly Patricia, a 26-year-old from Florida who lives with several chronic conditions, including endometriosis, inflammatory bowel disease and rheumatoid arthritis. She told The Mighty that her goal is to help others with chronic illness feel less alone and bring joy to their days.

“Since I know how stressful life with chronic illness can be, I wanted to do something that would make people laugh and possibly even make them forget about their pain for just a moment. Laughter is truly the best medicine; it’s free and has no bad side effects!” Patricia said.

 

Patricia said she gets inspiration for her memes from how she’s feeling, or how someone around her who has chronic illnesses is feeling. Then, she’ll write up a relatable quote and search for a popular animated character that has the emotion or reaction she’s looking for to match it.

“I feel like [animated characters] are friendly for all viewers (no matter what age they are),” she said. “Plus, animated characters have so much emotion and personality that it’s almost impossible not to relate to them!”

In addition to @ChronicIllnessMemes, Patricia also blogs and runs a YouTube channel to spread awareness of illnesses and encouragement to those who are struggling. She said everyone seems to relate to one meme or another.

“It truly shows how the little things really do make a big difference!” she said.

Scroll through for more memes or check out @ChronicIllnessMemes on Instagram.

'Chronic Illness Memes' Instagram Uses Animated Characters to Describe Chronic Illness

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