When I Revealed My Chronic Illnesses on a First Date

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As a teenager, I was very much the type of girl who didn’t bother with dating. The majority of my friends had boyfriends, and I showed little interest when someone brought up the idea of me dating someone. My excuse was that I was far too awkward. The real reason was that I was terrified.

I was terrified of not being enough. I had both autoimmune polyglandular syndrome (APS) type 1 (Addison’s disease and hypothyroidism) and Noonan syndrome under my belt, and I couldn’t fathom anyone being attracted to someone with both of these. I knew that being chronically ill meant I came with baggage. A relationship with me meant more nights in than nights out, having to be “illness minded” with all spontaneous adventures, sometimes being the caregiver, and even camping out in the emergency room. I wondered who in the world would willingly sign up for that?

My sophomore year in college, I found out that a guy who I shared several mutual friends with thought I was cute. My initial reaction was to think, “Oh, he doesn’t know.” But this time, I did something I had never been brave enough to do. I gave it a shot. We started texting back and forth, which led to a coffee date a couple days later.

I went into the date knowing exactly what I was going to say. I laid everything out on the table. And I mean everything. I explained illnesses, side effects, medications, and worse-case scenarios. A small part of me wanted to scare him off. I wanted to prove my point. But he stood his ground. He absorbed information and he asked questions. He was curious, but he wasn’t afraid. I made it clear that my circumstance was not temporary. My anatomical makeup was not going to change anytime soon. He stuck around; he did not see me as a burden. As our relationship grew, he kept learning. He became my helper and my best friend. Throughout our relationship, he saw the ugly. He saw the two-spoon days and many, many tears. He didn’t love me despite my chronic illness. He loved all of me.

My best friend and I are now engaged and I couldn’t be more thrilled. If I have learned anything, it’s that chronic illness does not make you less deserving of love. Your illness is not a radical conflict that a significant other has to tolerate. There will be people who will turn your illness to themselves and say, “Look at me, look at the grief this causes me.” They will plant seeds of guilt and body apology in your brain. Do not give this person your heart. I believe this is true for anyone with disability, mental illness or medical condition. Keep searching for the one that sees you in your entirety and believes that you are valuable. Keep searching for the one who sees beauty in difference.

young woman and man standing in front of dark background with arms around each other
Jessie and her fiance.

The Mighty is asking the following: What’s a dating story related to your disability and/or disease that made you laugh, roll your eyes, cry or was otherwise unforgettable? 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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To the Pharmacist Who Doesn't Have the Empathy of the Starbucks Employee Next Door

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Dear Pharmacist,

This letter will be worth it if it keeps one other pharmacist from slipping into the state you’re in: Disconnected from the people you can help.

Across the counter you see “healthy” people getting medicine. Maybe you think a timing hiccup won’t make things take a turn for the worse. It can.

I’ve worked on getting medicine for 11 days, because my autoimmune symptoms come back if I don’t. I gave the doctor’s office the information, received an alert to pick it up, and you had another medicine ready when I came in. Your staff said they couldn’t get through to the doctor, so, “Could I work on it?”

Today I get an another alert and return to the pharmacy. Again: it’s another medicine.

You call my doctor’s office, but “they can’t call in medicine after-hours.”

I know it can be done. So I dial up the on-call doctor, who apologizes on behalf of his office. No matter whose fault, the doctor gives authorization despite the “after-hours” rule.

Now you can give me medicine!

But… you don’t have it. You can’t get it until after the weekend. And here’s the fault: You’ve known I’ve been trying to get this nearly two weeks, and never got it in stock.

Your team suggests you try other pharmacies. I say I’m going to Starbucks. I can’t play middleman anymore.

So I walk next door and order a tall iced green tea. I’m on the brink of frustrated tears. The barista asks me how I am, and means it. I say something like, “I’m fine, CVS just can’t get me the medicine I need.”

She reemerges with an ice-cold Venti as I get my money out. But, she’s not going to concern herself with my money. She’s concerned a stranger is distressed. I thank her profusely for the drink and empathy. I am still so choked up and concerned with getting back to CVS, I don’t even think to get her name. She tells me to take care of myself — the best advice of the night.

Pharmacist, this letter should be boring and annoying, because playing middleman with you is boring and annoying. It’s how I spend my lunch breaks. It adds to why I don’t have the stamina for things like getting the license plate number of the woman who dented my car doors in that CVS parking lot I’m at all the time.

I don’t know what it’d take for you to recognize your job’s importance. Come with me to my infusion, or step into the colonoscopy room to see the inflammation the medicine could be helping alleviate? Or witness the power of medicine as people receive it in the hospital?

The only reason you’re a person in a coat who can’t help me is because you’ve let yourself become that person.

You end our encounter telling me pharmacies can’t get it until Monday. I ask, “There isn’t one pharmacy in LA that has this medicine?” You say, “It’s special order.”

Maybe you’ve messed up before when people needed medicine more than me. Let’s create solutions. I propose an idea for CVS Pharmacy. When your team makes a mistake, you’d have a fund to remedy it. So in this case…

Your employees (or a freelancer) calls all the pharmacies capable of transferring the order, and finds out if they have it. They then coordinate with a service like Postmates to deliver.

This “Remedy Fund” would make your job easier, too. I bet you face animosity at times. (I can remember at my New York City pharmacy, people used to shout threats to the pharmacy staff in frustration.) That’s where the Fund comes in. Maybe there’s a mediator who can take the customer aside to explain the nuances of things like insurance.

I’ll now say hi to you, dear reader (pharmacist or customer) — if CVS allotted a fund that could help alleviate the fallout of medicine miscommunication, would you use CVS? If so, please express it in the comments. I’ll add it to my very informal case that a Remedy Fund should become a thing.

I end tonight thanking the employees who respect their job — and the people they help in their job — enough to do their job.

And the Starbucks employee? Her job is important. Tonight, she reminded me there are people who not only do their job, but also see the people they help while doing it.

Since writing this I’ve been on the mend, and noticed that CVS is doing a lot of surveys to improve their service. Still, I think a “Remedy Fund” is in order. I realize how important every single person is in helping keep things from getting to an emergency health situation.

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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My Favorite Way to Answer 'So, How Are You?' as Someone With Chronic Illness

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Recently I have made an important discovery… and here it is:

To anyone other than me, the details about injections, drugs, latest conversations with the cardiologist and how my body has been reacting to the latest immuno-suppressant are totally boring. I watch as their eyes glaze over and the frozen expression of interest is carefully arranged on their face, in order to try and disguise the inner conversation they may be having with themselves about what to cook for dinner that evening.

And honestly, I really don’t blame people. Goodness knows I’ve done that exact same kind of thinking myself. I can’t deny that for a moment. I actually think it’s fair enough that they find my descriptions about how I’m really doing with my disease boring. It’s not happening to them. It’s not their body. My disease is my journey, it’s isolated and lonely, because I believe it can’t be otherwise — it’s my body. No one else travels around in it. Just me. And anyway, who would want to have an intimate conversational connection with my small blood vessels or gastrointestinal tract? I think that’s just kinda gross, and also a little bit weird.

People are now beginning to avoid the question, “So, how are you?” That was my first clue that I may need to modify my responses. So, I’ve managed to formulate a collection of responses that are more appropriate when they do accidently ask. I’m still perfecting these sentences, as I don’t want to outright lie about things in order to respect myself and what my life is really like. However, I’ve managed to stumble onto a real winner! And people love it. It goes like this: “A few struggles” (and here’s the clincher) “but trying to stay focused on the positive.”  

It’s fabulous, that bit. It’s kind of like offering them one of those floating orange and white rings they throw to people who have accidently found themselves in deep water and are struggling to get back out. A lifeline… that’s it. Throwing them a lifeline to help them get out of the quagmire they didn’t mean to get themselves into, but managed to when they said, “So… ah… how are you?” And honestly, it’s just lovely to see the look of relief flash across their face, as they frantically snatch at that lifesaver with desperate, clawed hands. “Oh goodness yes… oh well done… yes, it’s the way to go….you must stay positive.” Their relief is audible! And positive thinking seems so trendy right now — so “in.”

However, there is one exception to my new regime. Prednisone: steroid treatment is a total blessing for my inflammation pain, a curse for my weight gain. The thing is, I’m forced to take rather a lot of prednisone, and I’d probably be bedridden without it.

In any case, I simply can’t hide it, especially if I bump into people I haven’t seen for a year or two. Often they actually don’t recognize me. So in those instances, I feel compelled to try to explain my vast, and I do mean vast, change in appearance.

Unfortunately, I haven’t gotten that down pat yet. I tend to go into a babbled, over-complicated explanation about scleroderma, tests, antibody type… it’s like a runaway train getting faster and faster and increasingly more complicated until I’m totally screaming down that railway track with more and more information about the disease. Next thing I know I’m talking really loud and fast and seem to have found myself explaining my latest bout of hemorrhoids due to lower gastroenterological motility issues. All in order to justify why I’ve become what feels to me like a walking beach ball with a big round moon face for a head.

Or, to be a lot kinder to myself, all in order to justify why I’ve gained weight and don’t look like I thought I would at almost 50.

I guess I’ll have to work on that one. I’m thinking the place to begin might be to learn to accept that my appearance doesn’t actually mean everyone will judge it as harshly as I do.

Not “positive thinking” — just good thoughts. There is a big difference.

Follow this journey on Kim Tocker.

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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To the Family Members on a Quest to 'Cure' My Chronic Illnesses

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Dear family,

When you tell me to try a new supplement, doctor, self-care routine, exercise, psychologist, test, etc., I know it’s because you love me. You want me to have an amazing life filled with love, peace and joy. I am fortunate to have a family that wants only the best for me. You spend countless hours reading medical articles, helping me at home, making me laugh at doctors’ offices, and giving me space to cry. Your support is the reason I have made it through days with excruciating pain and tears of fear, and for that I am immensely grateful.

But I also want you to know that your quest for a magical cure hurts me tremendously. Based on current medical knowledge, my conditions cannot be cured. Your persistence that I need to be “fixed” is a rejection of not only my disability, but me. My disability is an identity, a community and a collection of knowledge. I need you to accept me in my entirety, including my disability.

When I was diagnosed with a rare form of mitochondrial disease and postural orthostatic tachycardia syndrome, you comforted us all by promising that I would “get better.” You suggested I only needed to find the magical antidote to the poison of my DNA hidden amongst the forest of health care. After consulting with nearly a dozen types of specialists, taking countless medications, trying alternative medicine and spending years in physical therapy in search of the antidote, I finally accepted that my conditions will likely affect me for the rest of my life. I became exhausted from fighting against my body and an undeniable reality. I decided to shift my energy from trying to change my life to loving it. And it was one of the best decisions I have ever made.

It was also one of the most painful decisions, because it meant I would no longer have the type of support I needed from you. Your instance on discovering a cure reminds me that you believe I can’t possibly live a fulfilled life with a disability.

I want you to know I do have a wonderful life, just the way that I am. I have a loving, supportive family and incredible friends who many only dream of having. I get make a difference in the lives of others every day when I go to work. I live in a community with caring neighbors and endless opportunities. And I hope I’m leaving a positive mark on the world for the next generations.

In fact, my disability is part of the reason that my life is so wonderful. Navigating the unknown of my disease and changing abilities has brought us all closer. The days my body fails me teach me how much these muscles and organs allows me to do and enjoy. Facing challenges that many people my age cannot even envision has helped me become a mature, strong young woman. Most of all, I truly know how precious each and every day is.

When you tell me that I need to search the ends of the earth for a miracle cure, I hear you say that I cannot live a happy life in a disabled body. But I am living a happy life because of, not in spite of, my atypical body. My body is the reason I get to be with you, and I love it for that. If you want to support me in the quest for a wonderful life, please support me in embracing my disability.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. 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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To the Woman at Walmart Who Called My Son's Stomas 'Repulsing'

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Tonight, we were in Walmart standing in a long line waiting to check out. My sweet 2-year-old wanted me to hold him. As I picked him up out of the cart, his shirt came up exposing his two stomas and bags on his stomach. Typically, I have a onesie underneath his shirt, but tonight I just got him dressed quickly to run to the store. The onesie helps to keep his bags in one place and makes it harder for him to tug and pull them off.

There was an older woman in line behind me who caught a glimpse and shrieked a little before she said to me, “Why in the world would you let someone do that to him?”

I turned around speechless and just looked at her before she continued and asked why he had them. I gave her the short version and basically said, “His colon didn’t finish forming so he needed them.” I left out that he had a rare disease called Hirschsprung’s disease because I was a little annoyed from her first statement. She then goes, “Well I am sorry, but I just think that is so repulsing, can you please keep his shirt down?” At this point I just wanted to shake this woman and scream “What is wrong with you?” But instead, I told her to have a good night and went to another line.

So now I’m sharing this picture — because there is nothing repulsing about my son. Stomas and ostomies seem to be a taboo, when in reality, more than 500,000 Americans have one. My son’s disease may be rare, but his stomas are not.

2 year old with 2 stoma bags

So here’s a little education for anyone who doesn’t know about stomas and ostomies. A stoma is a surgically created opening that allows the body to expel waste. Both of my son’s are from his colon, but stomas can be from your ileum (small intestine), or bladder. Was this the first choice of a life I would have chosen for my son? Absolutely not. But this was his only shot at life. When he was 2 weeks old, his colon ruptured. It left him with a life threatening infection that nearly killed him. His stoma saved his life. There is a very good chance he will have these for the rest of his life, and if he does, it will be my job to teach him a positive body image. It will be my job to teach him to love himself and his bags. Had he been a couple years older and been able to understand the ignorance the lady was spewing in line behind us, how much of a negative impact do you think that would have had on him?

What that woman doesn’t understand is, when my son is healthy, he is no different than any other 2 year old. He runs, plays, swims and goes to daycare. When he’s healthy, you wouldn’t be able to look at him and know he’s had more than 20 surgeries and procedures. You wouldn’t know he’s got more ahead in his future. You wouldn’t know he gets painful home dilation and irrigation treatments twice a day every day. You wouldn’t know that twice a day a catheter is put into his stoma to “feed” it stool in the hopes of growing his colon.

My son is my heart. He is so funny and full of personality. He is sweet and loving and kind but also a little ball of fire.

Please be kind and choose your words wisely, especially should you choose to comment about something that is none of your business. Everyone is fighting a battle you know nothing about, and my son is winning his.

Follow this journey on My Hirschsprung’s Hero.

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. 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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To the People Who Think I'm Nothing Like Those 'Lazy' Endometriosis Patients

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I’m laying on the couch watching “The 100” on Netflix. I need to tweet how actor Ricky Whittle hands-down beats Brad Pitt in “Fury” to some movie critics. I am so lucky! How do I do it all? Modeling, acting, stand-up comedy, producing shows for endometriosis awareness, meeting with doctors and patients, interviews to promote my projects while still finding time to “Netflix & chill” all by myself. I’m not like all those other “lazy” patients that don’t try to help themselves.

Scrolling through my tweets, I find a lot of the same assumptions about me:

“I wish I could have the best doctors and treatments like you.”

“I wish my daughter/wife/girlfriend/sister/friend had the drive you have to get up and do something about her endometriosis.”

“You don’t make excuses like my daughter/wife/girlfriend/sister — can you talk to her?”

Hold up! You have it all wrong!

Yes, I’m lucky. I do have what I believe are among the best doctors and experts for treating endometriosis in Canada. I fought long and hard for my multidisciplinary team, but finding it at all was a tremendous stroke of luck and no reflection of my connections, determination or strength.

I’m watching Netflix and tweeting film critics because I mentally, emotionally and physically don’t have the strength to do anything else. Yep… I’m just like your “lazy” loved one who should be more like me. I’m Netflixing so hard because it’s one of my coping strategies for self-care that helps keep my mind off the acute black-out pain I’m feeling. Your loved one is different. Right? They “don’t even try.” They “whine all the time” and maybe post cries for attention in social media so people take pity on them. So annoying, right? They don’t even have a self-care strategy or try any of the herbal remedies you spent so much time Googling so they’d get better! How inconsiderate of them. They should stop making excuses and be more like me. Amiriiiight?

You don’t see me force-feeding myself the homemade soup broth my mother brought me and the peppermint tea a comedian surprised me with on his way to his next performance. I’m not put-together unless you count being wrapped in the heated blanket my father got me and the Cookie Monster onesie pajamas my sister gave me for added comfort.

To inflict a person with so much trauma they experience crippling acute pain is considered inhumane, but when endometriosis does this to a patient some consider it to be a natural part of being a woman. Well, not just endometriosis. I believe this is the case for many complex women’s health conditions and chronic invisible illnesses.

Wait. I do have something that’s even better than what your loved one has! It’s my big secret of how I do it all and more. Want to know what that is? I will share with you because I want everyone with chronic incurable illness to have a vial of their own superhuman strength like mine! It isn’t a cure, but I hope it helps.

Are you ready for this? Pen and paper handy?

My big secret is: I have a legion of family, friends, and people that believe me. Nobody would dare call me lazy, accuse me of making excuses, or suggest I need to get over it no matter how well I am. My mom can run faster mad than you can scared and that’s no joke. There’s no messing around when it comes to blaming me for this incurable disease.

Imagine what could happen if more loves ones had enough and decided to speak out?

Imagine what it could be like for the ones helplessly watching us suffer to know they aren’t in this alone with us?

I sometimes wonder if people doubt endo warriors because we look fine on the outside, or if it is just too painful to admit the suffering is real and it hurts too much for them to believe. Maybe they are afraid or ashamed?

I can’t deny I’ve found good doctors.

Most importantly, I have a legion of family and friends that believe me and stand by me. Will raise their voices in their own way to be heard. They don’t judge me or tell me how they think I should be living with this disease! They come to doctor appointments, give me rides home from the hospital, to their houses so they can help me, are patient when it’s hard to be patient, give me extra time, encourage me to rest, and all of the loving compassionate things loved ones do when a devastating disease doesn’t involve pelvic pain.

All of the medications, mindfulness exercises, positive thinking, counseling, and treatments in the world can’t lift me the way my friends and family have.

Real-life connections. That’s what makes the difference!

If you’re reading this because your loved one has endometriosis, I want you to know you’re not alone in this.

I want you to know that it doesn’t matter how much you’ve doubted, denied, fought or guilted! You are human and you don’t know what you don’t know. I can’t blame you if you’ve gone years frustrated and angry!

You do have the power to make a difference just by believing her when she doesn’t do that menial task, is late, distracted or cancels commitments. Maybe she dropped out of school or lost her job, and telling her everything you think she should be doing isn’t going to make her well enough to change that. All the best doctors, treatments and self-determination in the world can only get her so far until she has a support system in place that accepts her without needing to punish her for a disease she never asked for that confuses the world’s leading researchers.

It won’t happen overnight, but over time you can give yourself the chance to see her (or him) for the warrior that’s always been in front of you.

My big deep secret is love.

women lined up on steps of building with posters
Endometriosis supporters participating the Worldwide EndoMarch in 2015.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. 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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