10 Ways to Show Love to Your Friend With a Chronic Illness

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Let’s be clear: This guide is meant to be just that — a helpful guide. I hope and pray you will never find yourself walking the lonely halls of those who struggle with chronic illness, but perhaps you know someone who is. If I know you well, it is your heartfelt desire to love them well, with purpose and intentionality. But it can be tricky.

Those who are fighting illness on a daily basis most likely have very little time and energy to nurture your relationship, despite how precious it is to them. This means they also have very little time and energy to express to you what they need. So today I seek, in the smallest way, to guide you in some practical ways to love them well.

1. Talk or don’t talk, but let them lead the way.

I remember early on in my pregnancy with my daughter — the dark days of physical suffering and the emotional shame and hiding that came with it seemingly never-ending —my dear friend stopped in to check on me one day after she got off work. She found me on the couch, tears of shame and fury streaming. I was violently ill most days (in addition to my neurological issues), and each time I got sick I also wet myself. I hated myself but also hated the rest of the world, which I perceived as being happy and carefree. “You OK, momma?” she asked. “Rough day,” I said. “Want to talk about it?” she asked. “Not that much,” I sniffed. With that, she picked up the remote and asked what I’d like to watch. I said I’d prefer something without happy people, and she suggested “Moulin Rouge,” noting that she died in the end and he was miserable and alone but there were a lot of really good songs before that. I declared that a winner. That was the last we spoke that afternoon. But before she left she made sure that I was well-fed and clean and comfortable.

I am not saying we should always leave people in their gloom. There is a time for taking people by the hand and gently calling them to get up. But that day was the day for providing a safe landing place, free of judgment, full of love and without the pressure of talking or entertaining someone. Sometimes talking just requires more energy than is available and other days all of the emotions must be vomited out. Either way, let your friend take the lead, and when in doubt, just ask.

2. Bring food.

I can’t tell you how far this simple, practical act of care can go. I have a friend who says, “Breakfast is love.” But I would suggest that food is love, a warm meal is love. How often I have stayed hungry instead of forcing myself from the bed or asking someone else to inconvenience themselves to feed me. “Can you feed me?” can be a humbling request to make. Many medications must be taken with food. Feed the ones you love, and feed them well.

3. Offer up the nap.

If you have asked your loved one what they wanted for Christmas or their birthday and they laughingly said, “A nap,” I will bet you $5 there was no actual joking involved. How I long to kiss folks on the mouth who free me to nap, who watch kids so I can sleep or who set me free from rest-guilt. It’s truly the gift that keeps on giving. Not sure what you can do for your friend? Feeling helpless? Offer up the nap.

4. Do not create pressure to meet your expectations.

I know this is hard because try as you may, you do have expectations and it hurts when they aren’t met. As in any relationship, the way around this is open communication. Often, what was realistic one day will not be realistic on another. Managing expectations may be tricky as limits fluctuate daily. Your ill friend will be trying his darnedest not to beat himself up for continually not meeting his own expectations. Feeling as though he’s also failed you will be too much to carry. He’ll need consistent reminders that you love him for him, not what he does or does not do. Your actions and attitudes will need to support this.

5. Allow room for grieving the daily losses along the way.

I know, I know, you don’t want them to be sad. You want them to see the bright side, that life is still good and there remains much to be celebrated.  And they will, and they should see that, but they still need room to grieve the fact that they didn’t make it to the concert at school or the event at work celebrating the accomplishment of their spouse, the family reunion, the beach trip, whatever. Maybe they need to grieve their hair loss or job loss or whatever their illness has taken from them today. Let them. Join them. Meet them there in their grief. Let them know they are not alone in the grief. Validate the loss. I believe this grieving along the way has to happen, intentionally. Otherwise it all piles up and the grief rots inside, turning to bitterness and anger over time. And after they’ve cried their tears and let the grief go, meet them in their gratitude, choosing to see all that is still right, worthy of being celebrated. Don’t rush the grieving. Don’t forget the celebrating.

6. We sleep a lot. Don’t shame us for it.

Don’t tell us you wish you could sleep all the time. No, you don’t. Not like this. And neither do we. We want to be productive people, living productive lives.  Unless it’s an extreme emergency or you know our specific sleep schedule leaves us awake at crazy hours, assume we sleep at least 12 hours a night and make room for it without making a big deal out of it.

7. Let our friendship be a guilt-free, judgment-free zone.

Does this one require explanation? I hope not.

8. Lay off the pep talks and makeup.

I say this as lovingly as possible. When I was giving birth to my son, two days into labor and three hours into pushing, my well-intentioned husband (who kept dropping my leg) turned to me and said, “You can do all things through Christ who strengthens you.” After I killed him with death ray eyeballs, I thought, “I’d love to see you do this through Christ who strengthens you.” After I had my daughter, I meant to make a rule that no one who came to visit me in the hospital was allowed to wear adorable trendy clothes, have a perfect blowout or wear makeup, but I forgot. So don’t you know, I have an album full of supermodels straight off the runway and then me with my so-swollen-I-look-like-an-alien head and my perfect baby.

When you are in the fight of your life every day, fashion and perk aren’t always at the top of your priority list. Having someone meet you right where you are — in your pajamas — can go a long way.

9. Be about the details.

This looks just like it does in any relationship — it’s just the sick version. Stopping at the store and picking up the prescription because you know it’s time for it. Bringing the bag of Jolly Ranchers from the store because you know they help with nausea, not cooking that thing because it causes nausea. Asking how that doctor’s appointment went because you know it was today, or not asking about that doctor’s appointment because you know they don’t like to talk about it.

10. Beware of the product-pushing.

Know that your person doesn’t make their health decisions lightly. More than likely many hours of research, prayer and discussion led them to where they are. I know you believe in your product. I am going to tell you a secret: There are at least five more of you who also believe in their own, different product with equal passion. And eventually all that passion can just feel like a lot of pressure and being pulled in a lot of unnecessary directions by a lot of well-intentioned people. Leave your information. Let them make the decision. And in the end, let your friendship be a guilt-free, judgment-free zone.

Thanks for loving your people so well. We’d all be lost without you.

Stacey with her husband and daughter

Follow this journey on Chronically Whole.

Lead photo source: Thinkstock Images

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Why This Woman With a Disability Was Forced to Miss Her Flight

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A wheelchair-user was forced to miss Christmas with her family because the airplane she was to fly on was inaccessible.

Ericka Jones, from Rochester, New York, was headed home to Florida on Christmas day when Allegiant airlines representatives informed her the jet bridge to the plane was broken, News 10 reported. Passengers had to walk up steps to board the plane from the outside, which Jones couldn’t do.

She had to spend the night in a hotel in Buffalo and take a flight out the next morning.

I’m mortified,” she told News 10. “This should not have happened. This should not happen to anyone.”

Allegiant told the outlet all other alternative solutions of boarding the plane were unavailable, however the Greater Rochester International Airport (ROC) said not all of the airport’s 21 gates were being used at the time and an alternate jet bridge could have been used.

Get more on the story from the video below: 

 

The Mighty reached out to both Allegiant and the Greater Rochester International Airport for comment but have yet to hear back. 

 

Clarification: A previous version of this story included a screen shot from the news video of a Southwest plane. The airline in question was from Allegiant Airlines and the photo has been changed. 

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What I Want You to Know About Being a Service Dog Handler

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They see his fur first, then they see his face.

The awkward smiles start.  The “ooos” and “aws” follow.

Then they begin to speak to him in a higher-pitched voice. Parents point him out to their uninterested children, saying, “Look at the doggie!” As if they had never seen a dog before.

Some even try to pet him without asking.

Then you have the individuals who scream (literally) when they see him.

None of them really notice the individual on the other end of the leash.

I hold my hand up and say, “Please don’t. He’s working.” They suddenly notice me and give me a look of shock, disdain or repulsion. Some even become combative because I don’t want them speaking to or petting my service dog.

Liz's service dog Mac
Liz’s service dog Mac

This is a normal day in the life of a service dog handler. People will randomly come to you and try to interact with your dog. They unknowingly or don’t care that by distracting the dog, they are putting the handler in immediate danger. If you see a service dog team in a public place, they are most likely there for the same reason as you. Service dog handlers do not allot the extra time that is needed to allow everyone to say hello to their dog. Many of us just want to get what we need done and go on with our day.

Service dogs are legally medical equipment under federal and state laws. A service dog goes through 1.5 to 2.5 years of intense and specific training in order to mitigate their handler’s disability. You must be disabled in order to utilize a service dog. In many states, they fall under the white cane law. While they are an optional piece of medical equipment, they are helpful in some cases. Emotional support animals and therapy dogs are not service dogs and are not covered under the Americans with Disabilities Act. And no matter how much you pay for an ID or vest on a website, it does not make your animal a service animal!

Service dogs are medical equipment when they are working. They need to pay attention to their handler and be able to perform the tasks they have been trained to. Tasks are based on the handler’s needs, not wants. Legitimate tasks include opening and closing doors/cabinets, retrieving dropped or named items, guide work, pulling a wheelchair, blood glucose changes detection, deep pressure therapy, etc. “Just being there,” “cuddles/comfort” and tethering a child to a dog are not tasks. Service dogs must be proficient in advanced obedience, public access training and task training. These dogs cost thousands of dollars to train and maintain. They can range from $10,000 to $50,000 to train. Even owner training is expensive. I have about $25,000 in my current service dog and $9,000 in my service dog in training.

Liz's service dog in training, Linc
Liz’s service dog in training, Linc

These dogs are not pets under the law. They do get to enjoy life and have time off. Many handlers participate in extracurricular activities such as obedience competitions, agility (there are many videos of handlers in wheelchairs participating in this sport), rally-o, etc. Service dogs must be in tip-top shape when working. They must be clean and healthy. In my experience, it is frowned upon in the service dog community to work a dog with a disability of their own. Service dogs rely heavily on their senses (sight, hearing, smell and at times touch) in order to work and assist their handlers appropriately. So, when you distract a service dog, they are no longer able to perform the tasks they need to.

So next time you see a service dog team, please do not make any sounds toward the dog and handler and do not try to pet a working dog. It is rude and very dangerous for the handler if you do. You should also never touch an animal you don’t personally know or don’t have permission to touch. We are not a walking petting zoo. Please respect us as a team and allow us to go on with our day.

For more information about service animals:

Disclaimer from the author: The breed shown in this article is not normally trained for service dog work due to their natural instincts. The author of the article has over 10 years of canine training experience and understands canine body language and behavior. Choose the dog breed based on your disability(ies) and your needs, not on the look of the dog. The dogs in the article were chosen based on the author’s needs, not looks. This article does not back any trainers or organizations; all information provided is to educate about service dogs.

Follow this journey on Liz’s blog.

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12 Questions I Wish I’d Asked My Child’s Doctors at Every Outpatient Procedure

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No matter how many times I sent my daughter into an operating or medical procedure space, it was always unnerving. Though eventually I knew what to expect — and so did she — there was always something I forgot to ask. Sometimes, even if I thought I’d heard the answer enough times that I didn’t need to ask it again, a new anesthesiologist or nurse followed a slightly different protocol, and I’d be caught off guard. Because of that, there were questions I wish, in retrospect, I’d had the presence of mind to ask each and every time. If you’re taking your child in for outpatient surgery or an invasive test, here are some things you might want to ask — and write down the answers in a notebook you can keep handy.

Before the procedure:

1. May I accompany my child into the operating room?

This can make a huge difference for your child and for you. As long as you feel you can maintain your calm in those circumstances, walking your child into the operating room and staying until he is asleep can contribute tremendously to peace of mind for both of you. If the anesthesia team is comfortable with this, be prepared to wear whatever sterile clothing the hospital requires in the operating room. (Bonus: We kept the large, white one-piece operating room suits afterward — they were great for messy projects around the house).

2. How long will my child be away from me?

This is a different question from “How long does this procedure take?” Often, the doctor executing the procedure answered us only in reference to his portion of the process. If a doctor is, for example, inserting ear tubes, he might answer “15 minutes, tops,” but when you add in the time to get your child to sleep under anesthesia, put in breathing tubes if necessary, and then to bring your child out of anesthesia and back out into the recovery room to see you, the total time might be closer to an hour. The difference is huge when you’re sitting in a waiting room.

3. Which specific medications will you be using on my child?

They may be giving your child any number of medications: one or more for anesthesia, antibiotics if infection is a concern, something to combat post-procedure nausea, topical ointments if there is an incision somewhere, or other drugs more specific to this procedure. Knowing this will help with troubleshooting if you notice anything unusual once you’re at home. You don’t want to learn the hard way that they opted not to put anti-nausea medicine in the IV.

4. Can we choose which arm/leg you use for the IV?

This goes for other lines and cords that may get attached to your child. Often they assume that a child is right-handed and put the IV in the child’s left arm. A left-handed child would find that difficult. My daughter preferred the tiny light they taped to her hand to measure her blood oxygen levels be taped to her toe instead — it was less annoying to her that way.

5. What is your Plan B if you are surprised by what you see when you begin the procedure?

There is always the chance that a surgeon or physician will see something once the procedure begins that changes their opinion on the right course of treatment. If the decision needs to be made to do something different, it will help you to know whether or not you’ll be consulted, whether they will send a nurse out to let you know what is happening, or whether the procedure will be put off for another time.

6. How do you expect my child to feel once she wakes up?

Some children come out of anesthesia sleepy and quiet, and some are quite agitated. Your doctor may not be able to predict how your child will react, but she should be able to tell you how much pain or discomfort is likely.

After the procedure:

7. Did you see anything that requires follow-up?

Some doctors will want you to make an appointment to see them in their office a week or more after the procedure, which is a long time for a worried parent to wait to hear this answer. They might be waiting for test results, but they can give you a quick overview of what they saw and what they suspect.

8. How long will my child feel under the weather?

Between the side effects of anesthesia and any pain from incisions or instruments that made their way into your child’s body during the procedure, it would be unusual for your child to be totally back to normal quickly. Knowing what might be particularly bothersome will help you take care of your child more easily in the days following a procedure.

9. What should my child eat and drink in the next 24 hours?

Your child’s doctor will almost always tell you to stay away from red drinks and JELL-O so you can tell the difference between a child throwing up blood and a child throwing up red food. If there are other restrictions, be sure to find out. Some hospitals will issue a standard “bland diet” recommendation, but your child’s doctor may tell you it’s fine to let your child eat his normal diet.

10. Under what circumstances do I need to bring my child back to the hospital?

A low-grade fever after being under anesthesia is not uncommon, but there are other reactions that your doctor may consider worth checking on.

11. If this is a procedure that your child has had before, was there anything done differently this time compared to the last time? 

In the case of my daughter, who repeated the same procedure (endoscopy) many times, it was too easy for us to assume we knew how it went and what would be done. After minimal issues with swallowing after all previous endoscopies, she had very noticeable pain after her next one. When we called the doctor to ask, he mentioned that he’d taken biopsies from much higher in her esophagus than last time. She could feel the difference, even though the doctor hadn’t thought to mention it to us in the recovery room.

12. What is the next step?

Even if you feel comfortable waiting until your child’s next office visit to learn what comes next in recovery or treatment, your child will likely want to know much sooner. If she’ll be limited by the procedure she just had, she’ll want to know how long it will take to be back to normal. If he knows that this procedure is one of several he’ll need, he may want to know when the next one might happen. Getting that answer while you’re still in the hospital with the doctor in front of you saves you a volley of phone calls and messages later on.

Even after my daughter had more than a dozen procedures under anesthesia, there were always new things I learned about her and her health by asking the right question at the right time. It is impossible to plan for everything, but knowing all the things you might need to know gives you the opportunity to plan for your child’s comfort, watch for the things that raise red flags, and avoid worrying about at least some of the what-ifs.

Lead photo source: Thinkstock Images

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Inside The Mighty: A New Year and New Challenges Ahead

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I was excited to get our team back in the office today and start the New Year together. We accomplished so much in our first full calendar year, but we have many challenges ahead in 2016. Over the holidays I took a step back to consider what we’re building, where we’re at in the process and the changes we have to make as we grow. 

More than anything, I was struck by a feeling of gratitude. We’re a work in progress for sure, but our team, our contributors, our partners and our investors have helped build a brand that is truly having a positive impact. As the parent of a child with Dup15q syndrome, I’ve learned so much this year from our community of readers and commenters, both those who have become big fans of us, as well as those questioning our work.

The ultimate goal of The Mighty is to empower people. We’re in the very early stages of building a platform that connects people with disabilities, diseases and mental illnesses and others in those communities – parents, doctors, therapists and more.

Here’s a brief example:

Google the word “fibromyalgia” and you’ll find a wealth of medical information from health sites, but for someone living with the condition, stories of personal experiences can often be far more helpful.

On The Mighty you’ll find dozens of stories like these:

The Impact of Chronic Illness on My Marriage

5 Ways ‘Fibro Fog’ Affects Me

Why I’m Showing These Private Photos of My Life With Chronic Illnesses

That last story begins with the words, “I want to invite you into my life. This will be extremely difficult for me. I’m a private and sometimes quiet person, but what I have to show you is important.” It kicked off a discussion with more than 20 others about their own experiences.

That discussion is what we’re really going after. In the end, the best communities help and support each other. We want to connect people. I don’t know of anything that connects people better than stories. So that is where The Mighty began.

We bootstrapped the operation in the spring of 2014, began 2015 with three full-time employees and we now have a team of 13. Seven of those team members have disabilities or diseases and the other six have at least one family member with a condition. Our purpose is what drew them to the company.

I’m proud to say that our stories have resonated with people. We’ve grown to 200,000 readers a day and national news organizations are covering our stories, giving them a much bigger spotlight. Several of our contributors have gone on Good Morning America, The Today Show and other programs to share their personal stories in their own words.

Our most powerful story in terms of sheer impact this year was that of Jean Sharon Abbot, who was misdiagnosed with cerebral palsy for 30 years. Since it appeared on The Mighty and gained international attention, more than 20 people have reached out to Jean to say they learned of the same misdiagnosis – and got life-changing treatments — because of her story. She’s since published a book.

Video will become a big part of The Mighty as we grow, but it was really just a place for us to experiment in 2015. Still, our very first video — on what it feels like to have obsessive compulsive disorder — won the audience award in a mental health film festival and has picked up more than 750,000 views on YouTube. To help kickstart our video efforts in 2016, a young man who has produced his own videos about living with Asperger’s syndrome is joining our team, working both in front of and behind the camera. He’s got some great ideas in store for our community.

We hope to strike many more partnerships with non-profit organizations this year, but also deepen existing ones. For instance, we’ll be working with NORD (National Organization for Rare Disorders) to offer our contributors opportunities to speak to medical schools about their patient experiences.

The Mighty was designed to help non-profits do the two things needed to accomplish their goals: drive awareness and drive fundraising. You’ll soon see non-profit badges with logos and resource links on our site. We also have plans to help non-profits with funding down the road, but that will come later. We currently have no sales team and no revenue. Our focus is on building the community.

On the tech side, we launched two key features last month. Our new site taxonomy now organizes thousands of stories, making it much easier for readers to find what they’re looking for. Like everything else, it’s not perfect, but it’s a big step in the right direction. And Mighty Voices Portal, our new publishing tool, will allow contributors to submit and track stories more easily. It will also allow our editorial team to get more stories onto the site each day.

Back when we launched, it took more than a week to get our first story submission. It received more than 5,000 visits in its first week and has since been read nearly 150,000 times. At the beginning of 2015, we had 5-10 submissions coming in each day. As we begin 2016, that number has grown to 75-100.

We’re thrilled that we’ve become a platform where people in the disability community want their voices heard, but it also presents many challenges.

We’ve taken criticism from some within the disability community recently over who should be permitted to write and how they should be permitted to write about their experiences. Those are valid concerns. The passions of this community run deep and they are multi-layered. Our team lives with disabilities and diseases so we understand this.

Our goal is to provide this platform for people to share their life experiences in a respectful and responsible manner. We’re discussing editorial guidelines not just internally, but with many others in the community, which will result in updated guidelines for contributors. We listen, we learn and we move forward.

That path forward for us is best embodied by Sarah Schuster. Sarah joined us first as a contributor in 2014, writing about both her personal and family experiences with mental illness. She was steeped in the community, helped others as a volunteer, and had lots of good ideas on how to expand our mental health coverage. We eventually offered her an opportunity to join us as a freelance editor. She did a fantastic job so we brought her out to Los Angeles and made her our full-time mental health editor. Her job is three-fold: she writes stories, edits stories by contributors, and develops partnerships within the mental health community. In her first six months, Sarah has grown our mental health community into more than 2 million readers a month. I’m incredibly proud of her and what she’s done.

I hope one day we have hundreds of people like Sarah on the team, qualified editors who live in the community they help lead. But we are still at the very early stages of this process, and we have to hit many, many milestones to get there. 

Today, our team is excited to get started on year two. Thanks to everyone for being a part of this and to those helping us make this better.

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To the Misophonia That Has Controlled My Life for the Past 6 Years

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Dear misophonia,

Hello, old friend. It’s me, the one who doesn’t like noises. The one who gets upset with people for chewing or sniffing or slurping or tapping their fingers on things or basically doing things that are typical bodily functions.

You have controlled my life for the past six years. You have dictated what I do, where I go and what times I do things. You forced me to arrange my life into an exhausting array of avoidance. I miss out on going to the movies with friends and will never have those dreaded college lecture hall stories to tell my children. I wish I could get through a meal with my family or sit in a waiting room without being driven into an anxious meltdown.

Misophonia, I can’t show people how I am feeling when you cause me to become enraged. The only physical thing I could ever show people to represent the way you make me feel is the imprints on my palms from digging my nails into them. People see me react to a sound or movement that triggers you and become irritated with me for having a reaction. How dare they get irritated with me? It isn’t me, it’s you!

No matter how exhausting you are, thank you. Thank you for stepping back into the shadows of my mind when I am out at a restaurant and many other things are going on. Thank you for teaching me that everyone needs their own adaptations in life and that we are not cookie cutter people. But most of all, thank you for helping me appreciate the tranquility of being alone, the beauty of silence and the times I get to freely enjoy with my family with minimal triggers.

Claudia standing in a park with her hands covering her face
Claudia standing in a park with her hands covering her face
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