Black and white photo of Aaron Carter

It can be hard to love your body when a chronic illness changes the way you look — and loving yourself can be even harder when you are constantly being shamed online because of your appearance. That’s what Aaron Carter wants his fans to know, he told Entertainment Tonight in an interview last week.

Carter, 29, known for his childhood hits “I Want Candy” and “Aaron’s Party (Come Get It),” said he was diagnosed with a hiatal hernia when he was 19. Since then, he’s lost 20 pounds from the pain and discomfort of his condition.

One of the hardest parts of living with chronic illness, he admitted was seeing the way his body has changed and dealing with body shaming.

“Oh my God, it hurts so badly,” he said when asked how he feels about his image. “It hurts so badly because there’s like nothing I can do about it.”

According to Carter, he receives hurtful messages from body shamers daily. Those criticizing him have asked why he looks so slim, why his face is so thin or if he does drugs like meth. The constant messages and hurtful comments, he said, have led him to deactivate his social media on multiple occasions.

When asked how he would respond to those who’ve body shamed him. Carter tearfully responded, “I am sorry for the way that I look.”

Not all of the comments he’s received have been critical. “To keep it 100 percent with you, there are so many other guys out there that have been reaching out to me on Twitter,” he explained. “I’m actually becoming a voice for people who are going through this.”

The interview comes several days after Carter was arrested for having marijuana in his possession. According to Carter, he smokes as a way of managing his chronic pain and anxiety as well as to stimulate his appetite.

“To everybody, I say, ‘Give me a break so I can look better, so I can eat,'” he added.

Header image via Aaron Carter’s Facebook page.

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I saw a post on Instagram the other day and it really resonated with me. It said, “We need to share our wars.”

I’ve felt lost more than a handful of times in my life. I’ve felt heartbreak, grief, divorce, illness, death and probably some hard times my mind doesn’t want to remember. I’ve realized over the years that the only way to get through any of it is to be honest and open about it.

 

When I got sick, I remember how alone I felt. I was pissed off and alone. I had no idea what I was feeling or what was ahead for me. Through the wonders of social media and the kindness of strangers, I began to not feel so alone. Others offered comfort in their advice, their stories and overall kindness.

Over the years I’ve learned a few things, and I feel it’s good to offer what I can to others. My hope is to give at least one person the comfort I was given. That said, it’s not just about helping those who deal with illness. I’ve dealt with a lot in my 27 years of living, and maybe my story could help someone. The ways I’ve learned to cope could work for someone else, or someone could learn from my mistakes. This is why we share our stories, and why I’ve chosen to share my life with anyone who wants to read about it.

Being open about life is a scary concept. There have been a few times I’ve sat staring at the words on the screen wondering if I could really hit publish. Right after I’d hit publish, there was instant anxiety telling me to take it back. So far I haven’t, and honestly it’s been the most freeing experience. Everyone has something to give the world; you just have to find the people who can handle and appreciate what you’re giving.

No matter if it’s heartbreak, grief, anxiety, depression, illness or anything else, I can guarantee there’s someone out there who can understand you, and maybe even help you through it. Sometimes it’s a simple word, or the chorus of a song; it may hit you just right, at the just the right moment that you realize you’re going to be OK.

This post originally appeared on Hustle and Heart.

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Thinkstock photo via kieferpix.


I live with several chronic disorders and all of them are “invisible.” I mean, if you looked hard enough, most of them are actually totally visible. So I have compiled a list of the ridiculous things people have said to me about my “invisible” illnesses.

1. “You just need some food and water, then you will be feeling better!”

This was said by a friend of mine after I started crying because I overdid it.

2. “You have memory loss? Well why don’t you just carry around a journal and write everything down? I read that in a sci-fi book where a character had memory loss.”

This was said by a stranger on Facebook in a writing group. I had asked if anyone else has characters with disabilities.

 

3. “Honey, you don’t have a weight problem.”

Said by a family member. I had opened up to her about some of my symptoms. I had gained a lot of weight in about two weeks.

4. “You’re tired?! You have no idea the meaning of tired. I only slept three hours last night.”

Said by a family friend. I have had chronic fatigue and insomnia for the past two years.

5. “Chronic illness is very rare, so is misdiagnosis. I know because I am a physiology major and we deal with statistics.”

Again, said by a random person on Facebook.

6. “Huh? You’re too young to be having joint problems.”

Said by one of my doctors. She then had me tested for one thing and has never done anything to see what is wrong since. I have hypermobility in my joints – my knees pretty much bend backwards.

7. “Didn’t your mother teach you that using the disabled bathroom is rude?”

Said by some lady in a mall.

8. “I don’t want to hear about your condition! Don’t you see my problems are worse!?”

Said by an ex-friend. She was having some boy problems. I had just been diagnosed.

9. “At least you don’t have cancer.”

Said by a girl in my youth group after she asked me why I take medications.

10. “Are you telling me you have some nonexistent, incurable disorder so that I will feel bad for you?”

Again, some random person on Facebook. We were talking about writing and I said I write about chronically ill characters. And that I have a chronic illness.

So that is my list of 10 ridiculous things people have said to me. What is something someone has said to you because of your disability?

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Thinkstock photo via diego_cervo.


I have Ehlers-Danlos syndrome (EDS). As a result of this, I have had some of the most challenging last few months of my life.

Due to the EDS, I was getting extremely weak, dizzy and sometimes even passing out. I was having extreme pain in my neck and at the base of my skull. I had trouble bending over because I would get a strange burning in my face that I described as getting highly chlorinated pool water up your nose. The back pain I was having I described to my doctors as “make you not want to live anymore.” I was so desperate for help and I just wanted the pain to end. I was in a dark place. I just couldn’t imagine living the rest of my life like that.

My geneticist had suggested that she thought I had craniocervical instability  and possibly  Arnold-Chiari malformation and tethered cord syndrome. After some testing it was determined that I did have these things. The problem was the top specialist for neurosurgery in EDS is in Maryland. I live in Florida.

I immediately put my pride aside and asked friends, family and strangers, via the Internet for help getting me the funds I would need to see the neurosurgeon, travel costs, expenses for follow-up care, back and neck braces – you name it. It all adds up.

I was fortunate enough to have my Chiari decompression and fusion of occipital bone to cervical vertebrae 2 on February 8, 2017. I’ve had multiple surgeries over the years, but by far, this was the most difficult. I awoke to difficulty swallowing, occipital neuralgia and trouble with my memory. These are problems I’m still working on, now five months later. They say sometimes EDS can delay healing as well as cause issues with dysphasia, so these are things that are a new reality for me. Some symptoms have improved, such as the burning in my face and the dizziness. The headaches I was getting are somewhat better. It was determined I had brainstem compression and my bones in my cervical spine and the occipital bone were all subluxing, causing a dangerous situation for my brainstem and cerebrospinal fluid flow.

At a recent re-check, I mentioned my continued weakness of my legs, problems with bowel and bladder function and loss of feeling in my lower extremities. I’ve had to start using an ultralight wheelchair. After some further testing, my neurosurgeon determined that I will need to have tethered cord surgery. When you have the cervical fusion, it can lengthen your spine, therefore exacerbating any tethered cord issues.

This explains why the issues I’ve had related to the tethered cord have gotten worse since fixing my cervical spine. When I got the news that I would soon be getting ready for yet another major spinal surgery, I was filled with emotions, “I am ready for this? I’m still healing from the last surgery. How will I afford this all over again?! Why me? Damn this EDS!”

The writer sitting on a hospital bed while wearing a neck brace.

My last surgery resulted in a major life change. To say the least, not all families are prepared for a partner who’s chronically ill and will have multiple, serious surgeries. The good thing that came from this is I have now found people who do want to be there, to hold my hair back when I’m choking and vomiting. People that don’t mind pushing my wheelchair and have become experts at explaining to doctors, nurses and the general public just exactly what is wrong with me. Those who take time to educate themselves about EDS and all of it’s fun friends, so that they can safely take care of me and speak up for me should the occasional fainting spell or brain fog come along. Family that steps up and volunteers to sit with me round the clock at the hospital to be sure the nurses crush my pills, and make sure I’m never alone.

With this next surgery rapidly approaching, I may not be financially prepared, but I do know this: thanks to the last surgery and recovery, I know who has my back (pun intended). I know that this small clan will rally around me and pick me up both physically and emotionally when I will inevitably fall. They will be there to feed my fur kids, talk with me (even when the pain meds make my speech garbled), feed me and dry my tears.

I’m still very anxious for my upcoming surgery. I’m wondering how I will get the means for it all and if it will help my symptoms or just stop the progression. One thing I do know is that I’ve been through this before and I’ve made it through each time. No matter how hard, I can do this again!

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “HOME” to 741-741. Head here for a list of crisis centers around the world.

Follow this journey here.

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Today I have a wedding of one of my oldest friends, but I woke up in blinding abdominal pain and with a debilitating UTI. I should just stay in bed, but last year I missed three really good friends’ weddings because I was in the hospital, so there is no way I am missing out on this one!

I am feeling really anxious about it, though. On days when I should just be in bed, even getting up and getting dressed is a mission, let alone getting up, getting dressed, doing makeup, driving an hour, putting up a tent and then attending a wedding! The joy of having a tent near the wedding is because I can sneak off and rest through chunks of the afternoon. There’s no way I could do it without that.

 

My angst about the day unfolding as it will has got me thinking about things I need at events like this. The ways people can support me, or someone else struggling with chronic illness and/or chronic pain, to make these events less nerve-wracking, isolating and stressful. These might be different for other people, but this is some of what I need:

1. Don’t make fun of me needing to carry cushions around with me or needing a mattress and duvet to camp with.

I used to be able to just sleep anywhere – camp in the woods without anything but a bit of tarpaulin, or sleep on the beach for days on end with nothing but a towel as a pillow. Now I need a full single mattress, my pillows and my duvet. I need comfort. I cannot lie on hard ground for longer than a few moments without horrible pain. I cannot sit on hard seats for longer than a few moments without feeling like someone is stabbing me in the pelvis. The only way for me to be able to attend events like this (or go anywhere outside my bedroom!) is with a cushion or a mattress or both.

2. Offer to carry things for me.

Simple things like someone offering to carry something for me makes such a difference. Not only does it help with pain (carrying things makes my pain so much worse!) but it helps me feel supported, which helps me feel a lot less anxious.

3. Check in with me and ask how I am doing throughout the day/evening.

Having someone I can be totally authentic with about how much pain I’m in, or how much I am struggling – or not struggling! – is such medicine to me. I feel so much less alone. It relieves a lot of the stress that events can bring, which in turn actually makes my pain less (because when we are feeling stressed and not relaxed, our pain is always worse, right?). Also, instead of going off to my tent or somewhere hidden to rest, knowing someone out there in the masses understands and knows where I’m at helps me feel able to rest in public. I’ve got “back up” if anyone doesn’t understand, or challenges it, or ridicules me.

4. Don’t pressure me into doing anything I don’t want to or can’t do. 

I would love to drink with you and dance until 3:00 a.m., but I can’t. It’s enough of an achievement that I am here at all. When I say I’m going to sleep, don’t try to get me to stay – I feel rubbish enough as it is, having to leave early. Let me go, because I am so easily swayed to stay and then almost always regret it the next day when my pain levels are so much higher and I feel even more ill than I did the day before.

When I say no to a drink, don’t joke that I’m boring or need to live a little. If I turn down some cake or something else I can’t eat, don’t try to make me eat it regardless of whether it’ll mess up my body. If I say no, it’s because it really isn’t worth the consequences! I really struggle saying no and setting those kinds of boundaries, so when I do manage to say it and look after myself, I really need to be listened to and respected. I can easily drop the boundaries I set out of fear of what people think or my constant FOMO (fear of missing out), which results in me frequently not listening to my needs!

5. Celebrate the fact I am here doing something, but don’t get the wrong idea that it means I am “better” or “OK.”

Recently I’ve been struggling with people seeing me out and about and thinking that must mean I am “better.” It doesn’t! It’s incredible I’m not completely bedridden and in the hospital like I was last summer, but I still feel 108 years old, and am still in blinding pain every moment. I am so grateful I am able to do things like go to friends’ weddings, or go to the river or the beach or the allotment, but I will spend the following week recovering and am always, always, in blinding pain and discomfort while I am doing these things.

Celebrate with me that I am well enough to be here (because this celebration and acknowledgement of where my health is at is medicine and really healing), but do it with the empathy, understanding and awareness that it doesn’t mean I am pain-free or am OK enough that I won’t pay for this later/the next day.

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Thinkstock photo via Halfpoint.


5 Ways to Support Someone With Chronic Illness at an Event

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