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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What It's Like to Be Diagnosed With a Chronic Illness in Your 20s

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On the surface, I look exactly like your average 21-year-old. I work, socialize and study like most of my peers. But there is an exception; I was diagnosed with Crohn’s disease and a severe form of irritable bowel syndrome (IBS) about a month before my 21st birthday.

When I turned 20, I welcomed the end of my teenage years with open arms. I was excited by the prospect of the fun and exciting experiences that I would most likely participate in over the next decade. But when my health started to decline and I was finally given my diagnosis, my world as I knew it completely shattered.

I had always been someone who had a small amount of social anxiety after a few bad experiences with unstable relationships, but this was exemplified in a way I could never imagine. At first, while my condition was first settling down as I began my treatment, I was completely terrified of being away from home for more than a few hours. I was still experiencing the effects of chronic fatigue that accompany my condition, but I was also still enduring a fair amount of pain and I was terrified of a flare-up. Bowel conditions are so stigmatised against that the thought of my condition suddenly reverting made me fear social judgment like never before, and my self-esteem suffered drastically. I felt gross and defective. I was young, lively and intelligent, but I felt completely repulsive and undesirable.

As my condition began to settle, thanks to a drastic lifestyle change of converting to the low-FODMAP diet and beginning medication, my self-esteem suffered in other ways. Now I could go out and socialize more, but it was completely conditional to what the nature of the event was and how my body was feeling. I had to say goodbye to eating and drinking whatever I want, and unfortunately, people noticed. Although being asked why I wasn’t drinking alcohol was an innocent enough question in its intentions, I felt humiliated in providing the actual reason as to why. It is completely irrational, but even now I panic and make an excuse like needing to drive, because I feel embarrassed to admit that my ability to consume alcohol is completely dependent on how my body is feeling at the time, and sometimes I just don’t want to risk it. On the outside, not being able to eat and drink to your hearts desire doesn’t seem like it’s much of an issue. But, in your twenties, it is extremely socially isolating when people act like it’s a buzz-kill.

These self-esteem issues often led me to overcompensate for who I am. I would put in more effort than what was required for my appearance in that context, and I completely changed how I portrayed myself on my social media accounts. After witnessing the first few people become awkward upon finding out what was wrong with my body, I was determined to be “normal” and fit in, so I made myself seem as appealing as possible. It seems comical, but at 21 you still have the majority of your adult life ahead of you, and when you feel isolated and different, you start to develop this irrational fear that people wont want to be around you. Most 2o-something-year-olds are determined to live carefree and enjoy their freedom and independence as much as possible, and when your lifestyle restrictions start to impose on what they want to do, you feel the rejection and judgement at full force.

Meeting new people and the thought of dating still terrify me, but I’m slowly learning to get over my fears. I still hold the self-deprecating view that I’m too complicated to be around because my diet is so restrictive in where I can go out and what activities I can participate in. I know it’s irrational, but I cant help but feel like I’m too much work for what I’m worth, so people just won’t bother; and this fear makes me worry even more about what my own self esteem issues will actually do when I enter into new relationships. Now I keep finding myself wishing I hadn’t have done this, or I hadn’t had said that because I don’t want to make a fool out of myself and push people away.

So, on the surface, I look like a healthy 21-year-old. I go out, I socialize, I party, I study and I work like most people I know, but everything is dependent on the meticulous effort I make every day so ensure I am able to do that. I know that sometimes it sucks that I’m not able to participate like everyone else, and that my self-esteem issues can be a buzz-kill sometimes, but there are real reasons for it.

The more accepting our society becomes about embracing people with chronic illnesses and health conditions, the happier I, and many other people in similar situations, will feel. Please think before you make comments, and be understanding of the demons people like me battle every day. I am learning to live and love myself again, but it will take time and a hell of a lot of support.

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When It Feels Like I've Been Left Behind During My Battle With Crohn's

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I think there’s probably nothing worse than being sick and having no one call to see how you are – or maybe worse is when people leave.

I was diagnosed with Crohn’s disease at about 14 years old. I went dark as many of us do when hit with something so much bigger than we are. I honestly did not understand my own disease until I was about 30, and I certainly never talked about it – no one did. But I made sure I looked good. That’s a secret talent we ladies who live with chronic illness have. We whip out the blush, scribble on eyeliner and smudge on pinky lipstick over our pale lips and bingo! We have that sporty glow… but ours is from the bottle. Not wanting people to leave me is at the heart of so much I fake.

When I have to have procedures or surgery and cannot find anyone to take me, I joyfully say, “Hey, no worries,” and then worry…. a lot. When no one calls to see how I’m doing after a procedure, again, as a warrior I show no fear of abandonment, but in reality, I am going even darker.

Flowers die if you don’t attend to them. I actually talk to my only plant left that my dear cats haven’t eaten. It’s not the prettiest, but that makes me try even harder – I want it to thrive.

It’s the same for people with chronic illness; we want to thrive and we don’t want to have to give stuff up – our dreams, animals, fun times, careers or even heels, darn it! We rail against the unfairness of it all. Me, I’m going to take stock out on tissues. I think I have just wiped out my local supermarket’s supply.

I ask, trying to sound nonchalant, like I just thought of it on my way to the Rivera, “Oh, and please don’t leave” or “Could you call more often?” But then people don’t and people still leave. Maybe I show too much courage in the face of the unthinkable and people think I’m fine, so they leave without a thought.

Friends leave, family leaves (that’s a biggie), potential partners leave, hell, sometimes even my hair leaves! When there’s so much leaving and nothing coming back, I’m like a balloon that looses all its air – I drop to the floor, abandoned and, well, pretty sad-looking… But then that one special person comes along and hugs me. They say, “Let me come for tea and I’ll bring the tea. Don’t worry, everything will be alright. I’m your person.” And, as if magic were real, I expand and float to the ceiling with joy. I feel hopeful, like I am lovable and wanted. I love that person so much that I eat all the cookies they brought and get sick again, but I don’t care – because in that moment I feel (dare I say it)…”normal.”

If you know someone with a chronic illness, call more often, go see them, bring the tea, ask if they need more tissues… but please, don’t leave them.

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When Crohn's Disease Forces You to Make Sacrifices for Your Health

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I find it a challenge now to look after myself so totally – that includes saying no to people or events that you would normally jump at the chance to go to.

What happens if you’re a yes person but your body says no?

You can either listen to your body and snuggle into bed or ignore yourself and push on with an extra cup of coffee in your system, and then reap the consequences of your actions in the future.

This is a topic matter that those with chronic illness have to weigh on a regular basis.

This week, I lost the opportunity to be a part of a project because I didn’t attend a social dinner/meeting I was asked to attend. I had fully committed to the project itself — however, this dinner/meeting came up, and, wanting to go, I said yes.

However, come Friday, I was exhausted. I had a big week at work, and come Friday evening when this meeting/get-together was, I (in their words) “bailed last minute.” And I did – but I couldn’t attend this social gathering if I tried. My body was done in. So, consequently, the manager questioned my commitment to the project and I was let go. Though on reflection, perhaps it was for the best.

This is a classic example of putting yourself first. It’s important now more than ever, because Lord knows I do not want to end up on the surgery table again.

So there we go. I guess it’s a sacrifice in a sense – you can’t please everyone. And I am bummed. But what can you do? I explained the situation to the head of the project — but it was a lost cause. Sometimes I feel people really don’t understand chronic illness unless they have one or know someone who lives with one.

I was frustrated, no doubt. Frustrated at losing the project and very frustrated at Crohn’s disease.

However, I slept all weekend. And it was wonderful.

Moving forward, I will continue to take my work seriously; however, if ever I am too exhausted or on the edge of being run down, quite frankly, I will always listen to myself, and my health will always come first.

#CrohnsAwareness

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