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So You Want to Date Someone With Chronic Illness?

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Here are some words of wisdom from a sassy someone diagnosed with autonomic dysfunction, postural orthostatic tachycardia syndrome, asthma and benign joint hypermobility syndrome. I felt inspired to write this list after dealing with the pain after a few relationships ended due to a misunderstanding of chronic illness. I’m constantly seeing this frequent occurrence in support groups for chronic illness and it’s devastating.

1. Please don’t ever tell us we’re being lazy. Just don’t do it. When you have a chronic illness, you’re like an older cell phone that can’t hold a charge for very long. The sad part is I don’t have a rescue energy source. I have to sit down or take a nap. Wherever. 

2. You’re going to need to prepare yourself for your significant other visiting the doctor, emergency room and pharmacy far more than you’d ever imagine. 

3. There are going to be days when I am the grouchiest person ever. This should be taken with a grain of salt. Pain is a constant factor and when you’re hurting all the time it’s hard to be a Pollyanna. 

4. Even though I’ve been through a lot and have established a tough cookie routine, sometimes I grow weary of the poking, prodding and pain and just want someone to cry on. Yes, I kept my cool when they brought in the 10-inch needle. No, this doesn’t mean I’m peachy keen on the inside. 

5. I am a huge cuddler. The great part of being sedentary at times is our desire to cuddle is through the roof, because some days, that’s all we can do.

6. Netflix, blankets and cozy pajamas are the way to our heart. 

7. I will not let my illness define me. I still have dreams and aspirations. I will still accomplish them. On those good days, you need to be prepared for adventures because if I have the energy, there’s nothing that will stop me. 

8. I will still take care of you. I will be your rock (slightly unstable rock, but still) and do my absolute best to make sure the relationship is taken care of.

The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

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Reframing Chronic Illness: When My Body Wrote Me a Love Letter

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Pain. Insidious. Fatigue. Intolerable. Thirst. Unquenchable. So dizzy, I walk like I’m on a ship listing to the right.

This is my body writing me a love letter, although that is not what I told myself or anyone else for a very long time.

My body is betraying me, I said.

Out loud.

Numerous times before, I realized that declaring a civil war on myself was not the best idea.

But that’s what it felt like: my body wasn’t working, cooperating, getting better.

It felt like all of my doctoring and researching and medicating and supplementing had turned out to be an expensive, exhausting, cruel game — one I didn’t know how to win.

I collected a bevy of specialists, and they were mine, mine, all mine. My cardiologist, my neurologist, my electrophysiologist. As if I owned them.

Lots of testing. Innumerable vials of blood.

I grew to love the cozy enclave of the MRI’s, with their whirling magnetic jackhammers serenading me.

My pain doctor scans the results. “You’ve got a lot going on. Your hip hurts because you have a labral tear. Did you have an accident?”

“Well, sort of…”

“What kind?”

“Fat ex-husband,” I say with a wry smile.

A week later, my neurologist regrets to inform me that I have failed the tilt-table test. It seems I have a severe case of orthostatic intolerance, or a body “allergic to standing.” She doesn’t like it. She wants to sit or lie down, even in the middle of the grocery store. She becomes muddled, incoherent, slurs her words.

They call EMS while I am sprawled out in the cereal aisle, boxes of Lucky Charms mocking me from the shelves above. The paramedics arrive; they shine lights in my eyes and ask me who the president is. I beg for saline as they load me into the ambulance. I notice the EMT giving me oxygen looks familiar.

“You look like Channing Tatum,” I breathe into the oxygen mask. He looks delicious. “Are you married?”

“Are you drunk?” he asks sternly.

“No! It’s 3 o’clock in the afternoon.” Damn EMT’s. Stop looking so good when my social inhibitions are gone.

I collect diagnoses that I have to explain, even to doctors. I say Ehlers-Danlos Syndrome (EDS) and they look at me quizzically.

Even though my body is staging a revolution, I look fine on the outside. This confuses everyone.

The ER becomes my best friend and my worst nightmare. I make frequent trips there in the middle of the night. They give me the ultimate trifecta: morphine, saline and potassium, singing the chorus of “Follow Up with Your Primary Care Doc Tomorrow,” as they make me sign discharge papers and shove me out the door before sunrise.

My scripts for opiates prove useless. They do almost nothing until they start to wear off, and then the pain ratchets up. I pass the “pain pop quiz,” scoring a spectacular 12 on a 10 point scale.

During the sleep study they torture me by putting electrodes, cords and wires over every inch of my body, keeping the hallways lights on super bright, and then telling me repeatedly to go to sleep.

I graduate summa cum laude with honors. Three sleep disorders and exactly zero minutes of REM sleep. Bravo!

My nightstand is filled with plastic bottles of pills. Some make me tired, some keep me awake. Some boost my blood pressure so I can stand up without passing out, but also make me itch like a kid with chicken pox, so I take another pill to stop the itching.

There is no “Plan B” for my body. Only Plan A.

Plan A: come on already!

I don’t have time to be sick. I’ve got bills to pay. Places to go and people to see, but I am too ill to go and see anything.

My hematologist gives me IV infusions of iron.

My neurologist gives me Adderall and sleeping pills. She suggests drugging myself to be less tired in the morning and more tired at night might be counterproductive. I nod.

My therapist tells me that I have to make peace with being ill. In my head, I give him the finger for a very long time.

My insomnia transforms into torturous hours filled with “pain-somnia,” and I discover that taping my pain pills to the center of my headboard is better than the 20 minutes of agony it used to take just to reach over to the nightstand.

This is my body betraying me.

No, this is my body writing me a love letter.

It’s telling me to slow down.

It’s telling me not to take it, or anything else, for granted.

It’s telling me that stress and unnecessary anxiety are best avoided.

It tells me I’m resilient, but not indestructible.

It tells me to rest when I am tired, to stop pushing through life as if it’s an endless ultra-marathon.

It tells me to stop obsessing about the future and all the great things that are going to happen “there.”

It tells me to be here now.

To be fully present.

To be right where I am, and to stop wishing I were somewhere else.

It tells me that this moment is crystalline in its simplicity.

Stunning in its absolute compression.

The gumball machine of my life is now spitting out moments instead of decades (or, at least, the illusion of decades).

This is my body writing me a love letter.

Your body is writing you a love letter, too.

This post originally appeared on Medium, here.

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? Check out our Submit a Story page for more about our submission guidelines.

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To the Boys in the Restaurant I Caught Filming My Son With Tourette's

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“Shaking a little bit does not change someone’s personality. It doesn’t mean you won’t have a successful life. Having Tourette syndrome just means I move a little bit. It has been both positive and negative. I feel different, but I kind of like being different. Sometimes people stare at me and I’m embarrassed. It’s OK if they don’t know and I respect that, but staring makes me uncomfortable. Maybe if people knew more about TS they wouldn’t stare. I completely get that not everyone is going to understand it. But they could try and learn. I do know I’m really good at guitar. I love music. My favorite bands are The Beatles, Guns N Roses and Shinedown. Hard rock is my favorite. I want to be a rockstar and start a band or join a band. I just want to play lead guitar.”

These words came from my son. Life is not always easy for him, but he has a great attitude about it. I am sharing this for many reasons.

One of which is this:

The other day we picked up my husband for lunch on his break and tried to have a little family time. The restaurant was busy, and sometimes when places get crowded, it increases my son’s tics. His tics are mostly motor (hand shaking, blinking, tapping things), although he has a few vocal tics (whistling and occasionally a little crack in his voice). As we sat there, I noticed two older boys, probably 13-ish years old. They wouldn’t stop staring. They were sitting with whom I assumed to be their dad. My son noticed their eyes on him, which increased his anxiety. I just kept trying to distract him to keep him from focusing on them.

Mind you, I was ready to slap their dad. He did nothing to stop them. (I don’t condone violence, but I’m just being honest…)

As time went on, I noticed one of these boys had gotten his phone out and was recording my son. Mama bear was ’bout to have her porridge hot. I was fuming but didn’t want to embarrass my son by drawing even more attention. Luckily, we were in a booth and I laid him down on my lap and rubbed his back so he was out of their view. I wanted to lose it. I wanted to grab that phone out of that dude’s hand and throw it. It was hard, but I restrained myself in that moment. I was respecting my son. He is basically just a better person than I am.

Here’s my message to those boys at the restaurant:

Please know this… I know you have that video of my 9-year-old son. Keep it. Save it. Don’t delete it. Let it remind you of what you did to hurt someone that day in the restaurant. Your staring embarrasses him, but you are no match for his spirit. You see, my son is not sitting around staring at people and trying to record those who are “different” than him. He’s not going to run over to Instagram and show his friends someone else’s neurological disorder for fun and laughs. He is busy. He is busy practicing guitar, writing songs and working hard to overcome people like you. Seriously boys, keep your phones charged. Because one of these days when you are at a concert waiting for that band you’ve been wanting to see and you look up on stage… you’ll want to record him again. Trust me. He’ll be amazing. He’ll have worked to accomplish his dreams. My son has a photographic memory. He’ll most likely remember you and throw you a guitar pick. That’s just the kind of person he is. He has Tourette’s. It doesn’t mean he won’t be successful in life. It’s OK with him that he’s a little bit different. Nothing will stand in his way, especially some kids with a phone their daddy pays for. So maybe he shakes a little bit. So what? It doesn’t change his personality. He inspires me every single day. I truly in my heart hope somehow this story finds you and inspires you too. Maybe if you knew more about it, you’d understand. So try and learn, OK? Oh, and I’m not gonna lie… I still want to smack your dad.

Piece of advice: Keep that video, dude. It may be worth a lot of money someday.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. Check out our Submit a Story page for more about our submission guidelines.

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Wearable Band Aims to Help Kids on the Autism Spectrum Track Anxiety Stressors

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A team of Canadian developers is turning to crowdfunding website Indiegogo to fund a wearable device for children on the autism spectrum.

“We realized that there would be huge value if we could measure and track anxiety in order to better understand behavior and even predict behavior meltdowns,” Awake Labs‘ CEO, Andrea Palmer, says in a video on the company’s Indiegogo page.

With this goal in mind, Palmer and her team created Reveal, a wearable band that records physiological responses to anxiety in real time.

The band works by measuring three major indicators of anxiety — heart rate, temperature and electrodermal activity (also known as “emotional sweat”) — through a pair of electrodes embedded in the band. Those signals are transmitted to the Reveal smartphone app, notifying parents and caretakers of impending “behavior meltdowns,” so preventative measures can be taken. Caregivers can also add contextual data to help the app develop a complete profile of the child.

“One of our earliest mentors suggested we look at how stress affected nonverbal populations,” Reveal’s lead biomechanical engineer, Paul Fijal, told The Mighty. “This led us to engage with people in the autistic community, who saw huge value in gaining a deeper understanding of stress and anxiety. When we heard that understanding anxiety to predict behavior meltdowns could have a life-changing effect on individuals with autism spectrum disorders and their families, we knew that was the space we had to be in.”

“The neat thing about Reveal is not only is it helpful for caregivers, helpful for therapists, but it’s helpful for the individual, the child,” Andrea Kennedy, whose child is on the spectrum, says in the video.

Reveal, Kennedy said, is unique in its ability to grow with a child. “As they grow into adulthood, it helps them self-manage,” she added.

“Reveal is empowered care — it is a tool that promotes understanding between individuals on the spectrum and the people who care for them,” Palmer told The Mighty. “Every person is different; every person has their own strengths, weaknesses, stressors, talents, likes and dislikes.”

A diagram provided by Awake Labs shows features of the Reveal band.

For Palmer, the technology has broad implications that could help conditions beyond the autism spectrum — including general anxiety, dementia, cerebral palsy and borderline personality disorder.

“Reveal is being designed to reflect every person’s uniqueness, to provide personalized care for the most impact,” Palmer said. “We hope it will help change the way the world sees autism, and help autistic people navigate and succeed in the world that we all share.”

Reveal will retail at $400 CAD (around $315 USD), with an optional app subscription of $10 per month (about $8 USD). Those who order through Indiegogo can get the device for approximately $275 USD and receive a free one-year subscription to the app. Awake Labs expects to ship orders worldwide in May 2017.

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To the Parents Who Feel Like You Have to Be 'the Strong One'

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rob and maya
Rob and Maya

I recently read an article from The Mighty titled, “16 Secrets of Special Needs Dads”. These men shared what they wish the world understood about them. One of the quotes that stood out to me was from a dad who said, “As strong as I may seem on the outside, I’m scared as hell on the inside for what the future holds for my little guy.” This quote brought back a memory from one of my daughter’s trips to the hospital.

My daughter Maya was having complications with her propionic acidemia, and we had exhausted all other options. We had her on the “sick diet,” but she was still vomiting and presenting large ketones. The genetic team said she had to go in for IV fluids and monitoring. This is when I break down. I’m normally able to keep things under control and the household running smoothly.

Everything changes when I pack the hospital bag.

I make my way upstairs to check the contents of the hospital bag and cry my eyes out. After I compose myself enough to not make my daughter nervous, I head back downstairs, and we are out the door. While I get everything ready, my husband Rob is always taking care of Maya, cleaning up and reassuring her. He is always the tough guy, never a tear: a man of steel.

One time, however, as I was gathering the belongings upstairs I overheard a conversation between my mom and Rob. My mom had been babysitting and was on her way out when she noticed Rob with tears in his eyes. She stopped to ask him if he was OK and how she could help. Rob apologized for his tears, reassured my mom he was fine, and said, “It’s just hard to be the strong one.”

I felt guilty for never thinking about his feelings and what he must go through as we prepare to take our baby to the hospital. On the outside he is calm and collected. He’s always reassuring, always positive, always on his “A” game. Until that point I didn’t realize how hard it must be to always be the strong one.

So to all you men and women of steel out there, I want you to know you don’t always have to be the strong one. It is OK to cry. It is OK to be fearful. It is OK to be scared as hell because we will all get through this together.

The Mighty is asking the following: What’s one thing you want to make sure the special needs parent in your life knows? *If you are the special needs parent, challenge a loved one to respond to this! Check out our Submit a Story page for more about our submission guidelines.

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To Those With Chronic Pain Afraid to Plan for Your Future

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I like to think of my chronic pain as a bus driver (just follow me on this one), because, you see, the bus driver calls all the shots — left turn, right, run the light. For years my bus was just barreling through the city, not caring about what was in its path. My pain was out of control and I was simply along for the ride.

I told a doctor about my metaphor once and she simply blinked and said, “Take back the bus.”

Challenge accepted.

This full-body takeover turned out to be a huge turning point in my life. When I started trying to take back control, I realized there were all of these “stops” that bus was supposed to be making, but it wasn’t because of the fragility and uncertainty that comes with being chronically ill. I felt so defeated as I watched peers reach goals that now felt like dreams of the past.

College.

A new job.

Developing friendships.

Becoming independent.

I had all of these wants, but I couldn’t plan on anything being secure enough in the future to commit. No matter if the plan was two days down the road or two months, I never made concrete plans to get off the bus for fear of the unknown. Instead, my friends Anxiety and Depression hopped on. Want to get coffee with a friend? Let me consult my chronic pain, anxiety, depression — you get the idea. I applied to college and got in. Four times. Ask me how many times I started classes and I’ll show you the door to my favorite hospital.

My point in all of this is that I believe there comes a time when we have to stop fearing the pain and the what ifs it may cause, bite the bullet and commit. The hardest thing I’ve had to do is fight for control of my life back. I wanted so badly to curl up and hide, allow choices to be made by anyone but me, and keep riding along. I knew, though, at some point this fictitious bus was going to crash, hard. You end up riding the bus for so long that you start to ask yourself if you ever want to get off, if you could even imagine a future for yourself anymore. That’s when it becomes vitally important to push past the fear and plan a way to fight back against the chronic pain that has taken over your life.

As one of my favorite songs says:

“We’ll never be ready if we keep waiting/For the perfect time to come/ Won’t be steady, we’ll never be ready.”

Take back control of your bus.

Plan for the future, plan for months, years in advance, because despite the lies bouncing around in your head now, you’ll still be here. You’ll still be fighting, but you won’t be waiting for the fight to end. You’ll be attacking your illnesses head on, always in control.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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