Perhaps you didn’t think we noticed your stares, glares and snide comments as my daughter attempted to manuever her mart cart through the aisles. Maybe you saw her slowly walking into the store from the parking lot. She looked healthy . You thought you were justified in your attempts to shame her from taking transportation from “someone who needed it.” I can understand your frustration. I’ve seen seemingly healthy people park in a handicapped space or grab the last mart cart available. But, before you make a judgement about my daughter, here’s what you don’t know. She has a rare disease, Ehler’s Danlos, which causes her joints to move out of place at the slightest provocation, leaving her bones dislocated and causing excruciating pain. The condition causes her to suffer heart problems, sudden drops in blood pressure that leave her lying in a crumbled heap on the floor. You won’t be able to tell any of this from looking at her because it’s an invisible illness.
Does this sound unpleasant? Imagine searching for years to find the answers for your health problems, slowly getting worse, with no results. Imagine finally discovering the answers and hoping to feel better with a treatment plan. That’s the outcome we all hoped for. Instead, when we were finally given the diagnosis, because she had gone so many years without treatment, she was suddenly struck with another rare condition, Myasthenia Gravis. MG is a chronic condition that causes muscles to tire and weaken easily. What does that mean? She has difficulty opening her eye on her left side, and difficulty when she tries to chew, swallow, smile, shrug, lift her arm up, grip, rise to a stand, or walk. It also affects her muscles which help her breath, causing a life threatening condition. Simply put; no breathing=death.
- You see a person who is abusing handicapped laws and taking advantage of transportation reserved for the needy when you look at my daughter. Here’s what I see:
Someone who had to give up her college scholarships and job because she could no longer stand.
Someone who has double and triple vision at all times.
Someone who cannot participate in the slightest activity because of excruciating pain.
Someone who has to take medication every two hours around the clock to be able to open her eye or control her muscles.
Someone who no longer has the ability to “hang out” with her friends.
Someone who has to have a chemo infusion every three months for the rest of her life to slow the spread of the disease.
Someone who has undergone test after painful test, including having dry needles stuck all over her body, to find some way to improve her condition. - Someone who has been told by her doctors she has ten “good” years left.
Does any of this sound like fun? I didn’t think so. She would gladly exchange her condition and return to her “old” life. I ask that you think before you speak, glare or stare the next time you see a person in a mart-cart who “doesn’t need it.” They may have an invisible illness, but they have feelings too. Compassion and understanding will mean much more than a snide remark. They have enough to deal with in life without having to endure judgement and ridicule whenever they step out in public.
Want to know more about what’s it like to deal with this everyday? You can read her writings at A Southern Celiac.
Pingback: Rare Disease Day 2015
Oh Pam, I am so sorry. I used to get snide remarks, even from family members when I was pregnant because I had to use a Mart cart when I went out. They all thought I was just lazy and didn’t want to walk around the store but I actually had HELLP syndrome and almost died having my only daughter. Some people would rather point and stare instead of understand.
I’m so sorry that you and your Daughter are going through this! She is just gorgeous and I know you are both amazing 🙂
People can be so mean. Your daughter is very beautiful and very strong! I actually didn’t even know there was such disease.
Wow my heart hurts for your daughter. I hope and pray that those stares stop and she gets relief from her disease. I will keep your daughter and your family in my prayers.
Your daughter is very courageous and lucky to have a mom that advocates for her health. I have some invisible illnesses and could get a handicap spot or use the electric carts in the stores. I don’t though. It’s more of a pride thing for me.
We live in a world where people fear and judge what they don’t know and understand. The Internet has made the world around us hypersensitive to others who differ from them. it doesn’t help that everyone thinks they are right and that they are the only one who is allowed an opinion. Humans are judgmental and it often leads to cruelty.
About the only thing you can do is continue to educate.
I understand. My daughter never wants to use the handicapped pass unless she absolutely has too, which is becoming more often.
I am so sad that your daughter has to suffer through this illness. I can only imagine how upsetting it would be as a parent, to deal with people making uninformed judgments. I’m so glad you shared this. I learned a lot about an illness I was unfamiliar with. But even more it’s a great reminder to us all that you can’t always judge a book by it’s cover. We never really know what someone is dealing with inwardly. Hugs.
It is upsetting as a parent. I only hope this post will help others realize we can’t always judge a book by it’s cover. Hugs to you!
Great post! I get looks sometimes like that when I park in a handicap spot and my son has a wheelchair! They usually give me dirty looks up until I pull the wheelchair out.
I am so sorry this happens to you. I hope one day people will realize we need to support others because we never know what is wrong.
People are sometimes ignorant and inconsiderate. I am so sorry your daughter experienced this. It is shame
It is a shame, but hopefully this post will help people realize that mart-cart might be needed!
I remember going to Walmart and complaining of being tired. My son said I should take advantage of the mart cart and I responded that those are people who need it. I can walk and I’d be very sad if I had to use that to get around.
I know there are many people who hurt in silence or invisibly. You won’t get any stares from me. Sharing!
Thank you so much for sharing, April!
i’m so sad you have to write a post like this in 2015. really sad. i wish as a society we’d stop being so quick to judge others…maybe even judge ourselves first?! you NEVER know what is happening for someone else. you just don’t. i always try to think of how i’d like someone to treat one of my loved ones in any situation and try to act with kindness. that includes looks and trying to at least offer smiles
a friend of mine from high school has ehlers danlos. i’m not sure if her son does. does b have a support system that includes others with ed? i’m happy to ask jen if b could email her.
She does have an online support group she participates in, Brett. Thanks so much for the offer. There is not a local support group though. I wish there was.
My daughter suffered a life threatening illness when younger. She wanted to get out of the house so we went out and I pushed her in a wheelchair and got the same treatment. People can be really ignorant.
I’m sorry that happened to you and your daughter. Maureen. I hope she is doing much better now!
As an RN, I am understand completely where you are coming from. Also, working for a very large school district for over 20 years as a resource nurse, I would see students with Ehler’s Danlos as well as other health conditions that didn’t always manifest themselves with outward signs and symptoms. But yet you knew how much the young person was suffering or had the potential to suffer if they did not restrict themselves from activities that most people take for granted. It is great that you are able to post this educational message and I hope people will read it and think before they speak hurtful words.
Thank you, Pam, for sharing your experiences with us. I am so thankful you were in the school system to help advocate for these children.
I am so sorry to hear about your daughter’s illness. I haven’t heard about it before now. I pray for her healing.
Thank you so much for your prayers, Veronica! We truly appreciate them.
I’m so sorry to hear about your daughter. The only thing that I’ve had kind of related to this is when I was riding the city bus with my friend (I’m on the borderline of being legally blind) so I can sit in the handicapped seating area located in the front of the bus, my friend was sitting on the seats next to the area so we could still talk and I could see where we were going. After a few stops the bus began to get crowded and people looked at me in disbelief that I belonged there. Even the bus driver at one point said “excuse me miss, these seats are for handicapped and elderly patrons.” I didn’t say anything but politely moved because there was a seat that I could take still near the front (so someone else could sit there). After my friend and I had arrived at the place we were going she went off on the driver for me, and said I had every right to sit there and had the pass to prove it and he shouldn’t be so judgmental. She called and complained about him too. — People assume things and don’t know what’s really behind the scenes in peoples lives, it’s bothersome and true. *hug*
I am so sorry that happened to you, Mary, and so happy to hear your friend stood up for you. I think people don’t expect young people to have illnesses. Hugs to you!
So many diseases can be considered invisible. I really dislike when people judge without knowing the background first. I commend your daughter & you for being strong through all the stares!
There are so many invisible diseases! I know it is easy to judge on appearance, but I hope this helps others to understand things are not always as they seem.
Very well written. Your daughter is beautiful and bless her strength. I know people are rude and I probably would have said something. No one knows what she is going through and she most certainly doesn’t deserve rude comments or nasty looks. I am so sorry she is suffering. Her strength is very, amazing!
I have politely told people she has Ehler’s Danlos and MG before. I hope this post helps people understand the symptoms.
I have never heard of this illness before. I am so sorry she has to suffer from this.
Thanks for reading, Janell!
I’m sorry you had to deal with the ignorance of others. I would never, ever judge anyone in a handicap spot or chair, even if they don’t look like they need it. As far as I know, she could need it because she has arthritis, or a prosthetic leg. I assume anyone who utilizes those things has a legitimate claim to them, and far be it for me to question that!
I know people sometimes abuse the system, but I am hoping to let others know not all illnesses can be seen.
I’m so sorry your daughter has to deal with this — both the effects of the illness and the effects of people not understanding her invisible illness. Thanks for sharing her story and raising awareness. As Oprah says, “When you know better, you do better.” Sending out lots of good thoughts.
I hope that this post will help others understand. Raising awareness is the first step.
People can be so rude and so ignorant. So sorry!
I am hoping that posts like this will help raise awareness of invisible illness.
It’s very sad how fast people are to judge, they don’t take the time to think what might be wrong; just that they are right.
Yes, it is sad. I hope that this post helps dispel the misconceptions about hidden illnesses.
This is so true. I work with special needs kids and some of them get judges by the way they look not their diagnosis. It is so sad but we need to stop judging. As long as the other person it not bothering you, leave them alone.
I have worked with special needs kids too, Lilith, and have seen the ways they have been judged. It is a shame. I learned long ago things are not always as I could see.
Wow I was unaware of all the symptoms of this condition. It must be such a struggle every day. I hope this information reaches people who judge.
I hope so too, Liz!
Because I know you guys, I know she suffers silently and sometimes imperceptibly, but this is definitely a good wake-up call because we simply can’t tell what’s going on beneath the surface with other people just from a glance. Hugs to your girl and you!
We are always so quick to judge. I am sorry about the stares. I hope it all gets way better
Thank you. I hope there is a cure for this someday too. 🙂
Wow this blog broke my heart a bit. I am so sorry for what your daughter has to go through. You just never know what someone is going through so we should all try not to judge until we know for sure. I pray things get better for your daughter and she genuinely can recover from this invisible disease!
Thank you so much for your prayers, Kiwi! We always appreciate them!
I am so sorry that your daughter has to go through this. People can be so cruel.
I’m sure people think they are justified with their comments, so I hope this post helps to educate others about hidden illnesses.
People can be so hateful and cruel. I am sorry you have people staring and judging. Chalk it up to ignorance. Hugs.
Thanks, Nicole. Hopefully getting the word out about invisible illnesses will help dispel some of the misconceptions.
What a nasty illness – I couldn’t image what day to day life is like for your daughter. However I do to have an invisible illness and I know those stares and looks. It makes you feel so little, I often look around to try and make sure no one is around before I leave the car, that way I miss them. I know myself I can be there, without it I wouldn’t make it to the store but still it doesn’t make it better. x
Thanks, Sarah. I’m so sorry you have to deal with the looks as well. You are in my thoughts.
It must be so hard for your daughter to deal with this. I will be taking a look at her writing. I try to never judge anyone using the Mart Carts. I know from experience you can not always see what is wrong.
Thank you, Ann. Illness is not always visible, as you know! I hope my post can bring awareness to many people.
Your daughter is beautiful! People never know what another person is walking through!
Thank you Angela. There is always a lot we don’t know or see about others.
I’m sorry your daughter has to deal with all of this. I definitely don’t judge folks who don’t “look” like they need the extra help. I trust that there’s plenty that I’m not aware of.
Thanks, Jaime. There’s definitely a lot we don’t know about other people. Hopefully posts like this one will help others realize that not everything is visible.
I am so sorry to hear of this ailment that your sweet daughter has – and yes there are so many things we don’t know that we don’t know – and a lot of snide people that are arrogant, and irritating – Big hugs 🙂
Thank you, Donna. I hope this post helps raise awareness of problems we can’t see.
Oh that poor girl. My mother has an invisible illness, so I completely understand how ignorant and rude some people can be about things like this. My heart goes out to your daughter. What a brave girl she is.
Thanks, Robin. My heart goes out to your mother also. I know how difficult it is to face invisible illness day in and day out.
I am sorry your daughter has to deal with her illness and ignorant people,I can not stand when people make judgements on other people when they have no idea what’s going on in someone life.
Thank you, Kay. So many people don’t understand “invisible illness.” I hope this post helps raise awareness.
Actually there are unkind customers at any store. I’m sorry your daughter is subjected to hasty judgment and hostility from insensitive, uninformed people. The important thing is that we all concentrate on not doing the same and that we educate people about hidden diseases, as you did above. Thanks for sharing this important information about Ehler’s Danlos.
There are certainly unkind customers at any store. We had just had a bad experience at Walmart when I finally decided to write the post. 🙂 I do hope this educates others. So many people do not understand all illnesses cannot be seen.
I’m sorry she has had to endure so much and yet still get the glares of people not being able to see beneath the difference. Thank you for sharing this and it will help me be more empathetic and less prone to judge.
Thank you, TerriAnn. I realize many people do abuse the system, but I want to promote awareness that not all illnesses can be seen.
I am sorry that so many other people have abused the system that we mistakenly think someone is abusing the system. I am so sorry that your daughter has this condition.
Yes, many people do take advantage of the system, which is sad, but I hope that this post will raise awareness of the many types of illnesses which can’t be seen.
She’s young and a beauty too, so I’m sure that adds to people instantly judging. I’m sorry to hear about her condition. No mom ever ever wants anything to be wrong with their babies ever.
This is true, Rosey, it is very hard to watch her suffer constantly.
As a chronic pain sufferer she has my empathy. I have lupus, achalasia (which I have already have had to have surgery for so I could swallow). Even though I’ve had surgery for the achalasia I still have esophageal and intestinal spasms. I know I have Raynaud’s phenomenon or Raynaud’s disease, though the doctor’s have never given me a diagnosis of such. Yet my nose, ears, chin, finger tips and toes will go ice cold whenever and where ever they decide to do so. They are so painful when they do. It is caused by spasms of the small blood vesicles. I know I have either a hiatal or diaphragm hernia, though the doctor’s are doing nothing about it, and it is so painful. My heart is skipping beats or having fast heart beats more and more often, and the doctor’s say, “Oh it is normal, it happens in lots of people, you just happen to feel it.” Well, it makes me dizzy and tired. I even get headaches because of it. Some people they just write off anymore in the health industry. I used to be an active participant in life, was a nurse. Though I look fine on the outside after overcoming Bell’s palsy in my face in 2009, I don’t feel fine. I have empathy for your daughter. Some people don’t understand true and lasting pain unless they’ve been through it. If the people at stores don’t have compassion, then they are a wasted cause, they never will unless it happens to their family member or themselves. You and your daughter need to do what you need to do, even if others are uncomfortable or uncompassionate. Hang in there.
I am sorry you are going through this. We went for years with people telling us it was all in her head. Even when the left side of her body shut down, one doctor told her to, “Quit trying to get attention.” Thankfully, he referred her to another doctor who immediately contacted the people at Vanderbilt research hospital and had her in the next day.
People make judgments about me too because I have a chronic medical condition that is not immediately apparent. I’ve learned to just ignore them because they don’t know what I endure on a daily basis.
You are in my thoughts and prayers, Maria!
Thank you, Pam. I will be keeping your daughter in my prayers as well.
I’m sorry your daughter has to go through this. I pray for her healing and advancements in treatment. I try not to jump to conclusions when I see people who appear “healthy” using handicapped parking.
Thank you for your prayers. Our family appreciates them. I, too, hope they can find a cure or a reduction for her pain.
As someone who suffers from my own chronic invisible illness that many people don’t understand and having experienced my own rude and callous remarks about my use of a wheelchair, electric or manual, my heart breaks for your daughter. People tend to see disabilities as black and white. You are either fully disabled and permanently in a chair or you are fully able bodied. They don’t seem to get that various invisible illnesses out there change and impact people’s lives to varying degrees.
I also know what it’s like to search for years for a reason you are sick. It’s beyond frustrating and it just makes you so angry and then to have to deal with judgements on top of it can be unbearable.
Thank you so much for this post. I also admire your daughter;’s strength from one “spoonie” to another.
Christine, it is so frustrating to search for years to find answers to diseases and be told , “It is all in your head.” Huge hugs to you.
I am so sorry that you and your daughter have to experience this, but I am so happy that you wrote this post. People need to think before they judge, learn compassion, and know that not ever illness is obviously seen. Huge hugs to you and your family!!!!
Thank you, Jennifer. This was a difficult post to write, but I hope it helps promote awareness.
I am all to aware of what jdugement of what others don’t know looks like. It sounds like your daughter has a strong family standing behind her to support, love and encourage her strength. I love that you are sharing this, people need to be educated on “invisible illnesses” … for me, it’s about bipolar and autism education – not always visible to others and yet so many judge my family members for the way they may act or appear because they “look” overall healthy so what’s the issue people think. If we can all rise above the judgement and educate instead, we would have a more loving society. Hang in there and keep educating others. xo
Brandy, I am so sorry you have to endure this with your family. I hope this post educates others that not all illnesses can be seen.
I have dealt with the stares and glares when I park in a handicap spot. My son is autistic and non verbal. Thank you for sharing your story of your beautiful daughter and don’t worry about the stares or glares. I have started to take my phone out and take pics when people stare at my child when he screams or shrills or happens to have a meltdown in the grocery store.
Cyndie, I am so sorry you have to deal with this. You are in my thoughts and prayers.
When you get stares or rude comments have you ever gotten to the point of politely (of course) educating the one(s) doing this? I’m just curious if you have gotten to that point.I can imagine your frustration.
Hi Aimee,
Yes, I have told people, politely, “She has a rare disease.” This usually earns me a look of disbelief before they walk off without saying anything.
It can definitely be hard going out in public with an “invisible illness.” I will keep you guys in my thoughts.
Thank you, Stacey!
Your poor daughter. I had never heard of this until the other day. There is a couple on Youtube who were talking about what I am about 100% sure is the same thing – the female suffers with it. They go by Eat Your Kimchi if you want to check them out.
Thanks, Dawn. I will check them out!
I’m so glad you wrote this post, I’m so sad that you both had to experience rude and unwelcome comments from strangersl But, on the same note, this was a great way to chance to raise awareness. I really hope your stories can be an eye opener for other people who could use a dose of reality. You’re daughter is such a sweet girl and doesn’t deserve insensitive comments. Thank you for taking the time to share such a personal story with us. XOXO
Thank you, Dawn. I also hope this helps bring awareness. I am sure many people do not realize how many are affected by invisible illnesses. And thank you for spreading the word on twitter! xoxoxo
bless her heart…u know i love her (and you) and my heart is broken to know what she goes through…you are such an awesome and strong mom and i applaud u for writing this post!! i know all too well about invisible illnesses and how people get treated….stop and think people…thanks for a great open your eyes post….(((hugs))))
We love you too, Melanie! I know you go through the same thing with your illness. I hope this post makes others stop and think before they treat people badly because they do not look ill.
Bless her heart. I know as a mother, it has to be hard to watch your daughter suffer so much. I am praying for you and your daughter.
Thank you so much for your prayers, Jennifer! We appreciate them.
I am just so hurt to find out that your daughter has to deal with this type of treatment and the remarks from ignorant people. I dearly adore her and loved meeting her as she had such a bubbly personality. You are a great mom and I am so glad she has you for support. Hugs to you both.
Thank you, Grace. We both loved meeting you too. I hope we can get the word out so that we can help others who are dealing with the same treatment.
How terrible that anyone has to deal with that type of treatment. I can feel your frustration and your love for your daughter in this post. She’s very fortunate to have such a caring mom! Don’t let the pettiness of others get to you! You have a beautiful, strong, brave daughter and ignorant people aren’t worth giving any of that precious energy you both need to! Sadly, there always seems to be someone who stands in judgement of others even when they know the full story. I pity them their lack of character and compassion!
She is a wonderful daughter. I only wish she didn’t have to go through this sort of treatment on top of her illnesses.
I’m so sorry that your daughter is going through this. It’s awful to have rare diseases, but then she especially doesn’t need people going out of their way to say mean spirited things. Your letter is well-written and I hope that it spreads for others to read because some people need to reflect on their behavior. Too many people don’t realize that you’ll never regret being too kind, but you will almost always regret being mean.
That is so true, Daisy! No one will ever regret showing compassion to someone in this situation.
I do pray that the doctors can help your daughter or hopefully find a cure for this (that would be wonderful). She is so young and you are right that people should definitely understand about these illnesses that are not visible and never judge anyone. Having a daughter myself I could only imagine the heartache you have. I will keep praying for her.
Thank you so much for your prayers, Maryann. Our family appreciates them.
I am sorry that your daughter has this condition. You would not believe the comments Ihave gotten about my son who is autistic and has the I.Q. Of a 2 1/2to 3 1/2 year old. I don’t have a platform to vent however. Try saying what you want to the people involved. It really doesn’t help to write about it later. They will not change. Also, a better tyoe of store could give you a better experience. Always expect the lowest common denominator at Walmart–always!
I am sorry you are dealing with this with your son. I can only imagine the comments you must endure.
Your daughter is lovely and I’m so sorry you both ever have to deal with the rudeness of others.
Thank you so much for reading, Jaclyn!
Pam, I love this letter! Your daughter is very beautiful and I admire her strength. The majority of the people who shop at Walmart are ignorant, unintelligent beings.
Thanks, Amy! It is disheartening to hear rude comments whenever we go out in public.
I know where u are coming from. I have Viral Heart Failure & on the outside I too look just fine. But if I have to walk all the way across the parking lot I wont be doing any grocery shopping. I dont use a cart yet but when i had broken ankles & surgeries I sure did. So sue me Ill show u the Docs note. A disability doesnt always show on the outside. Sometimes its all on the inside. When I get thru shopping its all I can do to get my groceries in the car & then when I get home I have to get them in the house, another feat. I feel for you daughter its very hard. Best of luck.
Thank you and the best of luck to you. I know it is a daily struggle.