To the Doctors Who Are Frustrated With Their Chronically Ill Patients

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Generally, doctors are thought to be healers, fixers. They see a problem, analyze it, figure it out, send the patient home with some medication, and soon everyone is happy: the patient is feeling better, no longer experiencing symptoms, and the doctor feels successful in having sent another person on their happy, healthy way.

It’s a different situation with doctors treating patients with chronic illnesses. When treating a patient with a chronic illness, it is a given when walking in the door that there is no “fixing,” no “getting better.” Of course, a doctor can give their patients medications to reduce symptoms and pain and try to bring them to a comfortable daily life, but it is widely acknowledged that with chronic illnesses, there are no “cures,” no long-term solutions, and that chronic illnesses have their ups and downs.

This is frustrating, of course, for the patient above all, as well as the patient’s caregiver(s). As someone with Crohn’s disease, I’ve seen my parents experience sadness, worry, even fear when I’m not feeling my best. I am constantly worried about how my illness will affect my daily life. And yes — it’s frightening waking up every morning knowing that I will never “get better.”

However, I can also see the frustration in my doctor’s eyes, in my physician’s assistant’s eyes, in the nurses’ eyes. They’re frustrated when I complain about my flaring symptoms, and sometimes will even lash out, asking me if I personally have done something to provoke these symptoms. This is, in turn, frustrating and invalidating for me. I have a chronic illness — not everything I do is triggered by my actions. My body is at war with itself, and since I have a severe case of Crohn’s, sometimes my body and its symptoms and behaviors mystify me just as much (if not more) than the doctors and nurses.

Though the frustration of my medical team is often disheartening to experience, I also understand their frustration. I know my team has the best of intentions for me — I know every team for every chronically ill patient does. I know they want me to feel better — not only does that mean that I’m living a happier healthier life, it also means they get to deal with me less, and I get to deal with them less! Everyone would be happier if I were feeling better. So I understand that they may feel incompetent and frustrated when their best efforts seem to be doing nothing.

So, to my doctors and nurses, and the doctors and nurses treating chronically ill patients worldwide: thank you for your efforts. I feel just as frustrated with my body as you do, if not more. I’m sorry we’re stuck in this situation together, but let’s just keep on fighting the fight, and try to keep my stubborn body in check. By working together, we can probably achieve a lot more than working separately.

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What It Means to Sign Up for a Relationship With Someone in Poor Health

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I struggle with Crohn’s disease, but I do my best to not let it interfere with my life. However, it is always especially frustrating for me when it does. I’m often canceling plans, avoiding delicious foods because I feel sick or I know they will upset me, or I’m spending hours on the phone calling doctors, insurance providers, and pharmacists.

Although I do my best to not let this chronic condition define me, it will always be a part of my life. Recently, it’s been especially prominent, and it wasn’t until I read an article the other day that I realized just how much it was interfering with my relationship with my partner.

My partner and I have been dating for over two years now. He’s always been supportive of me, and helpful whenever I was feeling sick. But while I’ve been struggling for months to get things under control, those little efforts seem to become commonplace.

I forget that my partner, as an independent person, isn’t required to help me feel good. Sure, as a partner, we are supposed to stick together through all life’s challenges, even if that means most of those challenges are hitting me. But I forget that his devotion and help isn’t just affecting me. It’s affecting his life, too.

It was when I came across an article from a small blog, The Most Overlooked Characteristic of Who You Want to Marry, that I had a bit of an epiphany moment.

“Few people consider sickness and suffering when picking a mate. They consider how the other person might look in the morning or what bad habits they might have. They consider what offspring they could produce or what extended family they might bring to the reunion. Yet few people ever consider what is a vital question — can I suffer with this person?”

Although my partner and I have no immediate plans to legally “tie the knot,” I still believe the concept should be applied to any long-term relationship. I may not be on my death bed, but I am suffering on a fairly regular basis. Is my partner willing to sit through my suffering? Chronic pain caused by my Crohn’s comes and goes, and depression, distraction, and crankiness are common side effects I struggle with; and in turn, he has to experience the outcome.

“Beware: not everyone suffers well.”

I certainly don’t suffer well, and I rarely spend a flare-up with a smile on my face. And yet my partner is still willing to grab painkillers, or my heat pad, when I’m curled in a ball, miserable from my body attacking itself. I’m sure I’ve been a burden to him, but he’s never complained.

The more I sat back and thought about it, the more I considered how little things caused by my condition got in the way of our life together.

My common struggles with acid reflux, or GERD, resulted in nights were we couldn’t snuggle up to each other. I would have to lie upright for hours just to be comfortable.

Or every spring and fall, when allergies season causes my immune system to spike, and I would often receive a more frequent dose of immunosuppressants. Every time around this year, I would also become ill with the latest version of the flu. Within a week, my partner would also have it. It almost feels like dating me is a hazard to anyone’s health. I feel like I should have a sign: “Warning! Dating me means guarantees you’ll get the flu every season!”

There are plenty of other instances: Leaving friend’s birthday parties early so I could go home and curl up. Spending time on family vacations in the hotel because I was too sick to sightsee. Or frequently making my partner wait while I used the facilities for far longer than a normal person would.

Another common side effect I feel is guilt, and every instance of my illness getting in the way of his life just feeds into it. Yet, through it all, I still get a kiss and an “I love you” whenever I succumb to a bout of pain. I may not suffer well, but my partner is more than willing to love me and care for me through it all.

As I contemplated all these instances, I realized I shouldn’t feel guilty. My body will feel like a burden to me and anyone else that decides to live with me. Dating me simply means there’s going to be a few more bumps in the road.

However, I will always, always, be grateful for my partner. He has done everything and more to make me feel comfortable and loved. It’s no wonder that I’ve had feelings of complacency in recent months. He has signed up for my illness and now he helps make me feel normal.

Now I have to ask myself: Could I return the favor if our roles were switched? Or if we were both struggling?

I just hope that if anything happens down the road, I can reflect the same level of devotion he has shown me.

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The Year That Wouldn't Have Been Possible Without My Ostomy

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We hope that in the future, history textbooks will casually omit this year’s events while millennials who have reached senior-hood drink heavily as they regale their grandsons and granddaughters of the year that really took a turn with Harambe.

While we all waited with bated breath for the clock to strike 12 a.m. on January 1, 2017 before 2016 got Betty White or the Queen, some of us were a little sad to see 2016 go.

Yeah, I was.

Do not get me wrong – the death of young me’s beloved Princess Leia, whose gold bikini I dreamt of wearing while fighting off evil monsters, really hit me hard. That’s without even getting into how messed up the world seems to have gotten since I was that young me.

Despite what 2016 was to many people, it was actually a really great year for me.

Then why, you might ask, did I title this post “the year of shit?”

I hate to be so punny, but it just worked! Without my literal bag of shit, I wouldn’t have been able to experience any of what this year had in store.

2016 started with me ramping up my own business. I had left my old job at a digital agency at the tail end of 2015 and by January 2016, my own digital agency started to flourish. This year, I have experienced tremendous growth I never could have expected with a wonderful team of girls who inspire me every day and clients who truly let me do the work I love to do (which I’ve been too busy doing to properly redo my website… ha!).

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2016 was also the year that my ambitions to be an actress really started to come together. I can’t even count how many sets I was on this year, but I was so lucky to have been a part of some amazing productions and fun commercials. To me, this year solidified that I wasn’t just some girl who was pushed into acting by her actress grandmother, but a woman who actually has the ability to be successful in an industry that she is so passionate about.

 

 

 

See you on @tsn_official for the @nba! #acting #actor #commercial #setlife

A photo posted by Jess Grossman (@jessgrossman) on

 

 

 

 

2016 was also the year of love. I got to ring in the New Year already engaged to my best friend but ready to experience all the fun things being a bride included!

Matt and I were thrown an amazing engagement party by my great aunt and uncle and grandfather, where we were able to prepare ourselves for what a wedding really meant! I was also thrown a gorgeous bridal shower by my bridesmaids and two bachelorette parties by my amazing friends. I was so lucky to be surrounded by so many special people.

 

I love my bridesmaids !! #jessandmattrimony #bridalshower #wedding

A photo posted by Jess Grossman (@jessgrossman) on

 

 

 

 

I don’t have a happy place. I have happy people ????❤️ #jessandmattrimony #bacheloretteparty #bachelorette #bacheloretteweekend

 

A photo posted by Jess Grossman (@jessgrossman) on

 

Of course, 2016 was also the year I got to marry my best friend and commit myself to him in front of all of the people who made an impact in our lives. That, and it was a rocking party – I mean, c’mon, we had a make-your-own-burrito bar! (I still dream about my burrito… and marrying Matt, too, of course…)

 

Another repost via @eclipse_ig from our wedding! #jessandmattrimony #wedding #love #married

A photo posted by Jess Grossman (@jessgrossman) on

 

 

 

 

Make your own burrito bar? Yes please! #jessandmattrimony #wedding #vegan #therearemeatoptionsrelax

 

A photo posted by Jess Grossman (@jessgrossman) on

 

2016 was also the year some of my friends got engaged, some had babies, some also got married and some followed a new job away from home. My brother got a promotion and my mom started dating a great new guy, so 2o16 was a good year for the people around me, too.

2016 was also the year Matt and I bought and moved to a new condo, the year I got my very first car and the year we even bought a rental property – all the things that truly make me an adult. (I have to adult now, right?)

Unfortunately, 2016 did have one loss of someone close to me, and that my was grandfather – my dad’s dad – who passed away at the age of 94. (Picture below with my mom and uncle.) I mean, not everything can be perfect, right? RIP, Zaida – you lived a great life.

The point I am trying to make here is that 2016 was essentially, for me, a pretty great year – a year that would not have been possible without my ostomy. Without it, I wouldn’t have been healthy enough to take a risk and start my own business. Without my ostomy, I wouldn’t be physically able to embody different characters in different commercials and films. Without my ostomy, I wouldn’t have been well enough to enjoy my engagement period or marry my best friend or build the life with him that I have always dreamed of. Without my ostomy, I may not have even been alive to experience what 2016 had to offer.

And to top if all off, without my ostomy, Uncover Ostomy would never have been able to expand by introducing three (and a half) amazing new contributors and their stories, nor would we have been able to announce our exciting new partnership with The Mighty! Yeah, 2016 was pretty great for Uncover Ostomy, too.

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While I am sad that everything I got to experience in 2016 is over, I know that this is only the precursor for many more amazing things to come.

So with that, happy New Year, everyone!

I cannot wait to see what this year has in store for us all.

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10 Tips for Reducing Anxiety When Traveling With Crohn's Disease

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After completing my master’s degree, I decided to take time off to travel before starting my full-time job. I was lucky enough to be afforded this opportunity and had waited in anticipation throughout my college career to finally have some time off to relax.

As anyone with a chronic illness knows, life can be unpredictable. My Crohn’s disease has prevented me from lots in the past, particularly when it comes to travel. I could not study abroad as an undergraduate because I struggled to maintain remission for more than a few months at a time. I have had to leave vacations early, or not attend at all, because of my Crohn’s disease. As I enter into a time of my life that is supposed to be filled with fun trips and vacations, there is constantly a worry in the back of my mind that I will be too sick to check off all of the items on my bucket list.

I am writing this on a plane at the start of my fourth trip in the past two months; this week I am heading to Washington D.C. and Nashville. My Crohn’s disease is not terrible, but also not great at the moment, so, per usual, I have to consider the limitations and contingencies I might incur. Although I may have to make a few more accommodations than the average person, I am still able to make the most of my experiences.

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Here are a few of my essential travel tips to lessen the baggage that comes along with Crohn’s disease:

1. Buy travel insurance.

Unfortunately, I have had to cancel flights in the past because my disease was flaring and I was not healthy enough to leave home base. Ensuring you can get your money back for your flight in the event of a medical complication is definitely worth the extra 20 or so dollars. If you’re anything like me, committing to travel plans ahead of time is a gamble and this way, you can rest assured (and by rest I mean nap excessively) that the hundreds of dollars spent on airfare won’t go down the drain.

2. The aisle is your best friend.

To lessen my Crohn’s-related plane anxiety, I always book the aisle seat. It is tough enough dealing with the tiny airplane restrooms, let alone having to ask the person next to you to get up and let you out, sometimes more than once. Also, take a peek at the layout of the plane when choosing your seat at the time of purchase and if possible, select a row closest to the restroom.

3. Bring your own snacks.

It is difficult to predict what types of food you will have access to, especially in a new city. I always carry snacks that I know will not upset my stomach in my purse or backpack. I would much rather be prepared than be left with no other choice than to eat foods I know will not agree with me. And never be afraid to speak up for yourself; there have been times when my family has eaten at a Mexican restaurant (a big no-no for me) and I went elsewhere to find a “safer” meal.

4. Carry all essentials on your person.

Layovers happen, as do changes in plans. If you take oral medication, whether early in the morning, during the day or late at night, bring it with you. This also applies to items you may not always need, like a change of underwear and even pants. No one likes to talk about this one, but accidents happen, and it is better to be safe than sorry.

5. Stick to the basics.

A big part of traveling is eating and drinking new things, which for me and many others with digestive issues can be a source of trouble and anxiety. It is easy to forget about the consequences of certain foods and want to treat yourself to things you wouldn’t normally eat. I’m not saying you should deprive yourself of great food, but practice moderation. I have found that if I stick to a diet my body is used to 95 percent of the time while on vacation, that other 5 percent can be filled with fun foods without too much issue.

image of crosswalk in front of brick building and starbucks coffee sign
Photo by Ashley Esper

6. Scout out the territory. 

The first thing I do when I go anywhere is find the nearest restroom for reference in case I need it later. This has become routine for me; my family has even fallen into the habit of pointing out the restrooms to me upon entering a store, restaurant or any new place. When struck with the painful and panic-inducing urgency to go to the bathroom, knowing which direction to head in makes that moment a lot easier.

7. Don’t be afraid to ask.

In many cities, bathrooms are locked to non-customers. This has been a major issue for me and others I know who struggle with IBD. While some establishments are very strict on this policy, others are willing to accommodate you if you simply explain the situation. Quickly find an employee and kindly ask for access to their bathroom. If this fails, I have even found luck in approaching a paying customer and asking for their receipt to see what the passcode is to the restroom.

8. Stay cool.

If you are traveling with a medication that you self-inject, such as Humira, bring the pens or syringes packed on ice in a cooler. Most of these types of medications cannot be left out of the fridge for extended periods of time. I was able to attain a free cooler and ice packs for when I travel with my Humira from the drug’s website. Going through airport security has typically been a nonissue in my experience, with the exception of one instance when I had to explain why I was carrying a sharp object. If you are staying in a hotel, be sure to call ahead and verify the room has a refrigerator; if it doesn’t, explain you need one for a medical reason and they will accommodate your request.

9. Keep it clean.

Although I don’t particularly enjoy using hand sanitizer, I make sure to always keep it in my purse while traveling. I would much rather have my hands smell like alcohol than catch a cold from a stranger. Germs are everywhere, especially in public places, and being on some heavy duty immunosuppressants makes me a prime target for catching whatever bug is going around. Sanitizing wipes are also good for quickly wiping down plane, train and toilet seats before you pop a squat.

photo of a street leading to the white house
Photo by Ashley Esper

10. Know your limits.

If you are anything like me, you get overly excited and ambitious when visiting a new place. I want to do everything and anything there is to do and sometimes I forget that I need adequate rest to avoid a burnout. This is a tough one, especially when traveling with others that share your excitement and ambition for exploration. If you need a nap or are feeling too tired to function without a sugar rush or caffeine boost, listen to your body. Tell your friends or family that you’re going to sit out the next afternoon or late-night adventure. Trust me, although you may fear missing out on a fun time, you will feel better the next day if you slow things down when necessary. Knowing my limits helps to make my Crohn’s disease less limiting in the long run.

To stay up-to-date on my travels and for more IBD advice, follow me on Instagram @ashleyesper. To read more articles, visit www.AshleyEsper.com.

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7 Reasons Why Giving 'Advice' About My Illness Is Hurtful, Not Helpful

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This week I found out that I had failed the last available drug licensed for Crohn’s disease in my country. This means that I am now at the mercy of off-label treatments while waiting for a new drug to become available. This means, that while my gastroenterologist will try everything he can to improve my quality of life, I’ve now run out of options that are reasonably expected to work. For me, this means becoming used to a level of disability that I do not welcome for the foreseeable future.

When I shared this news with friends I was surprised by their responses. I’m not sure what I was expecting. I suppose I was hoping for a level of empathy and a feeling of support; I wanted to know I am not alone in this. I’m fortunate that some friends provided just that response.

But, overwhelmingly, I was met with “helpful” suggestions to cure my Crohn’s. These included:

“Have you tried a vegan diet, it worked really well for me.”

“Essential oils might work, here’s a link where you can buy some.”

“I’ve got a friend with Crohn’s and know it can be managed, is there a self-help group you could go to?”

This was coupled with a wealth of articles sent to me promising “cures” for my disease. Each cure was a medicine I had tried, an alternative therapy that had no medical backing (that I had likely tried, too) or some new diet. Instead of feeling supported, I felt dejected and alone.

As someone who has battled with a chronic illness for over a decade, these types of responses are not new to me. What surprised me was that they were coming from people who had seen me struggle for years and who still seemed to have very little idea what my disease is or how it affects me. I wanted to share why “helpful” suggestions are often not helpful and offer an alternative; I know advice comes from a place of caring, but I need you to know that can hurt. Here’s why:

1. It shows you are not listening to the reality of my situation.

If I come to you with my thumb cut off and you offer me a standard plaster, it clearly shows that you’ve misunderstood my situation. What I need is a lift to A&E and some pretty immediate first-aid.

When I come to you and tell you I’m out of treatment options, that I feel terrible and that I can no longer lead the life I previously enjoyed, you suggesting that I take essential oils is the same as offering me a standard plaster. It completely ignores the reality of my situation.

2. It subtly suggests my illness is my fault.

When you say “have you tried this diet, it cured this person” what you’re saying is that there is a cure and that if I tried this cure I wouldn’t continue to live with this illness. Crohn’s, like many chronic illness, cannot be cured. I can promise you, I have tried everything I can think of to improve my situation. Every single day is a battle to improve my health. If you knew how many things I have tried, elemental diets, liquid diets, FODMAPs, Lofflex, paleo, probiotic and a myriad of bizarre mixes prescribed by “nutritionists” you may not be so quick to suggest another “cure.” Trust me, I’ve tried it and whatever it is you’ve found will not cure Crohn’s. It hurts to hear the subtle suggestion that I’ve let half of my life be dictated by a disease when I could have just taken some omega-3 tablets and been fine.

3. It’s about you.

If I say your suggestion probably won’t help improve my condition and your response is to be hurt or offended, then that shows your advice was to make you feel better, not me.

4. It makes others believe your “cure” might work.

Unfortunately, people aren’t always the best at doing research. We all want to believe that people’s problems can be fixed quickly and easily — it makes us feel safer. So, when people see your post suggesting my illness can be cured by taking slippery elm, they may take a sigh of relief, because that’s one problem off their list. Your post can help perpetuate myths around chronic illness and mean more people fail to understand the impact and difficulties that goes along with living with one.

5. It moves the conversation away from my situation and into a conversation about the merits of your “cure.”

If I’ve told you some big news about my health, or even some small news, what I’m saying is that something is going on in my life and it’s impacting me. I’m reaching out, I’m asking for support. I’m trying to share with you what my life is like right now. Some days, support from other people is all that keeps me going, if I’m telling you things are getting difficult, that means that I might need help.

By telling me about your new “cure” you effectively shut down the conversation. I can no longer tell you about how I feel, because if I tried what you offered my problem would go away. Suddenly, I’m placed in a position where I can no longer expect empathy and a listening ear but, instead, must go off to Holland and Barrett to buy a case of turmeric pills.

6. It puts more economic and emotional strain on me.

Life costs me £550 more on average a month as someone who is disabled. Costs come from being unable to work, requiring specialist equipment, maintaining a specialist diet and from the costs of medicines and travel to appointments, to name a few. My finances and physical resources are spent on getting myself better. I see my consultant, my GP, I cook meals that I know I will be able to digest, I try and walk each day to stay healthy. They may seem like small things, but when you’re sick for a long period of time and suffer from fatigue, each little action takes a lot of effort.

Your suggestion might seem easy to fulfill. Just another diet, just some more pills, just one more appointment. But, on top of what I’m already balancing, it may be incredibly difficult for me to include into my life. I may not have the money to fund it. Importantly, I may not have the emotional energy to invest in another “treatment” that I know is unlikely to work.

7. It reminds me of how alone I am in this.

For me, what stings most about the advice I get is that it shows how little you understand my condition. Do you know what it is? Have you bothered to google it? When you suggest crystals to heal my Crohn’s, all that shows is that you fundamentally do not understand what I live with day by day. When that comes from a stranger, I can handle it. But when it comes from a friend, from someone who claims to care about me, I don’t understand why you haven’t tried to learn about something that has changed my life so much. If you want to learn, I can tell you. But when you offer advice that clearly demonstrates you are ignorant about my condition it reminds me that I’m alone; because the people around me don’t even understand the basics, let alone the complexities, of this disease.

What helps:

But, like I said earlier, I have got some amazing friends and family who do make a difference and offer great support. I wanted to share what they do and why it works, just in case someone else might benefit from their knowledge.

1. Listen to what I’m telling you.

In order to support someone, you have to understand what they’re facing. There’s only one way to do that: listen to them. That means, listen to what they say, ask questions to clarify any misunderstandings and then listen some more. Once you know what their situation is you’ll be in a much better position to help support them.

2. Learn about their condition.

Chronic illnesses can be complex. There’s a lot of medications, a lot of technical terms and a lot of bad research. It can be overwhelming navigating everything and it’s likely your friend or relative has been handling all this on their own. Become your friend’s research ally. The internet provides a wealth of brilliant and terrible information. Learn to be discerning. If they think it would be helpful, ask your friend to tell you what’s going on with their illness so you can find out more about how their illness affects them. Gain knowledge, weigh the evidence and learn to differentiate between sensationalist media and information that may offer real help. Information is power.

3. Offer practical help or support.

Living with a chronic illness is tiring and stressful. It’s isolating. Each day I fight my body so that I can look after my basic needs. Cooking, cleaning, and keeping myself sane is about all I can do. I may look like I’m functioning well, but it’s taking everything I have to maintain that illusion.

You can help! Ask me what I need. Find out what I can eat and make me a meal. Come ’round mine and watch rubbish movies with me. Offer to come to appointments. Take me to the shops. Even sending me a nice message over Facebook or a letter helps enormously. Anything that helps me feel cared for and supported is immensely appreciated.

4. Accept I may not get better.

This is a hard one, but you may need to accept I may not get better. This isn’t a sprint, it’s a marathon. If you want to be in my life, you may need to learn to be a friend in a different way. There may never come the wonderful day when I have energy, when I can be what I once was, when I can offer the same practical support to you.

But, my life still has meaning. I can listen to you, I can still be fun, I can offer a different insight in the world. I hope I’ll be better one day, but I might not, I’ve accepted that – you need to, too.

5. Remind me that I am so much more than my illness.

My best friends, the ones I love the most, find ways for me to enjoy the world around me. They see what I’m passionate about, they see my limitations, and they find a way for me to enjoy my passions while acknowledging my limits. They get in their PJs with me and eat ice cream while we discuss politics and books. They plan trips in advance so I can make sure I have everything I need. They take me out my bedroom and into the big wide world. They remind me of my humanity.

I love these people. I wouldn’t continue to survive without these people. If you can, be that person to someone. I promise, it’s worth the investment.

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How My Video Camera Made Me Human to My Doctors

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So often my opinion hasn’t mattered because of the invisible nature of my symptoms.

I’m an Invisible Disability Project community member, and participated in an educational social media project called “This is Me.” I spent a few weeks reflecting on my life with invisible disabilities, Crohn’s disease and PTSD. I was hospitalized when my “This is Me” videos were posted. I had an incredibly difficult surgery that lasted four to five hours. A week later I developed full system blockage in my intestines, and then an anastomosis which led to an abscess filled with infected hematoma. Several times I came close to dying in the hospital. I’d like to think that I didn’t die partly because of the support I was receiving from sharing information with others. Only when the videos went live did I realize how many individuals were seeing them. A community of 65,000 individuals is a lot of people!

I shared the videos with my nurses at the hospital. At first they were skeptical of watching my social media posts, but I was persistent. The nurse manager of my unit later came to me, and stated that her father also had Crohn’s disease and passed away years ago from colon cancer. Until she watched the videos, she never knew how hard it must have been for him to live with the illness. He was private about it and never let anyone know how it affected him. Kind of like me, I thought… 

The nurse manager and I discussed how to improve patient care at the hospital.  We formed a bond, and she spread the videos to her staff: nurses, medical assistants, nurse practitioners, physicians and PAs. The nurses expressed support, some changed their approach to managing my care, and many discussed their own experiences. One nurse discussed her own invisible disability, type I diabetes, and how it affects her day to day.

Another nurse initially expressed frustration with my videos. She disagreed with the idea that society doesn’t do enough to help people like me. She vehemently disagrees with Obamacare, and I do not. I explained that although there are parts of Obamacare I do not agree with, I do agree that no one should be denied insurance coverage for pre-existing illnesses, nor should there be a lifetime cap for catastrophic insurance coverage. The nurse had no idea that Obamacare includes provisions that help people like me maintain insurance coverage. After the discussion she changed her tone, and became a partner in my medical care.

My surgeon reviewed the videos as well, and was supportive. He said that the things I said, needed to be said, and he needed to hear them. 

It was extremely validating to have the medical community hear what I said to them.

These experiences were phenomenal and very personal to me. They made me less jaded at the time. Since my discharge from the hospital I have re-experienced many frustrations with the medical system, which reminds me of the constant need for advocacy and education.   

I find that we are all on the same side. Despite different political views or opinions about who deserves what, or how many people should receive assistance, we can develop empathy towards one another to find solutions that help the most people.  My wife and I are grateful for the support of the Invisible Disability Project community.  Thank you for helping us get through this tough time in our lives.  We hope to be here for you too.

Watch Kris Sutter’s This is Me videos from Invisible Disability Project.

This is Me is an IDP educational media project that disrupts the silence around invisible disabilities. If you would like to participate, sign up here.

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