5 Things I’d Tell Someone Recently Diagnosed With a Chronic Illness

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First of all, welcome to the family. Although I’m not sure of the exact path you took to become part of the “broken adrenal glands club,” I would like to extend to you the warmest welcome.

As someone who has been living with primary adrenal insufficiency (PAI) for a little bit, I would like to share five things I wish someone had told me immediately following my diagnosis:

1. It’s OK to be scared.

You have just been diagnosed with a rare disease that has no cure. The treatment also requires quite a deal of self management. It’s OK to be scared. It’s OK to feel completely overwhelmed. It’s not OK to panic. As hard as it may sound, try to view this diagnosis as a gift. With a name, there is knowledge. With knowledge, there is treatment. With treatment, there is life. Focus on the fact that you’re alive.

Amber Nicole the mighty.1-001
The doctor’s original notes as he explained the adrenal glands to Amber Nicole and her mom during her initial diagnosis in May 2005.

2. You will probably gain weight.

Please don’t ever try to manipulate your medicine just so you can drop a few pounds. This weight gain is good. Yes, you will now need to focus more on a healthy life style. But please don’t ever view the steroids you take as the enemy. These steroids give you life. A larger number on the scale is well worth the price of remaining alive.

Amber Nicole’s cat standing on six pairs of pants that no longer fit her due to weight gain.
Amber Nicole’s cat standing on six pairs of pants that no longer fit her due to weight gain.

3. Your social group will change.

Yes, you will probably lose “friends.” Yes, it will appear as if your social circle is drastically diminished. It’s OK to let them go. Those that stick by your side during this journey are worth so much more. It’s much better to have a smaller group of people who are unbelievably understanding and loyal than a larger group of people who abandon you during your time of greatest need.

Amber Nicole celebrated her birthday with friends and Big Tex in 2014.
Amber Nicole celebrated her birthday with friends and Big Tex in 2014.

4. You’re not a failure.

One of the first things your doctor might have told you is that it’s still possible to live a “normal life,” whatever that means. They may explain that if you just take your medicine as prescribed, your disease will be well managed. Well, flares still happen, and sometimes they’re completely out of your control. Forgive yourself. Every hospital visit, every ER run, every sickness and every stress dose provides an opportunity for you to learn and adapt so you’ll be better prepared for the next adventure.

An adrenal crisis triggered by food poisoning in August 2014.
An adrenal crisis triggered by food poisoning in August 2014.

5. You’re not alone.

Yes, you have just been diagnosed with a rare disease that even the experts don’t fully understand. However, it doesn’t mean you’re alone in this journey. Reach out to others who have walked a similar path. If you don’t know where to start, reach out to me. I can link you up with several different networks. Lean on us for support. Don’t further isolate yourself.

An adrenal insufficiency meet up from January 2014.
An adrenal insufficiency meet up from January 2014.

And again, welcome to the family. Let us continue to work together so that we can remain Clearly Alive.

Amber Nicole and her husband at her Decade of Diagnosis celebration.
Amber Nicole and her husband at her Decade of Diagnosis celebration.

Follow this journey on Clearly Alive.

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5 Reasons Why Being in Therapy Makes You a Badass

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This summer, during an 8-week outpatient program, I was required to participate in group therapy sessions twice a week. For me, group therapy was a combination of two things that make me anxious: sharing my feelings and people. Once during the session, I equated group therapy to waiting in line for the guillotine. Sharing your issues with a group of people you barely know while two psychologists take notes isn’t exactly the easiest thing to do.

One does not simply

That’s when I started to realize it — being in therapy takes guts. For those of us in therapy, I don’t think we acknowledge how brave we are for baring our souls to individuals who are essentially complete strangers.

Here are five reasons I think being in therapy takes courage.

1.  You’re asking for help.

Why U No

This may not seem like a big deal, but for a person like me who’s extremely independent and doesn’t want to burden anyone, asking for help is extremely difficult. For so long I’ve had the deluded idea that asking for help is a sign of weakness, but I’m slowly learning it’s a sign of strength. It takes courage to ask for help when you’re feeling vulnerable.

2. You’re admitting you have a problem.

Grumpy Cat

By admitting you’re struggling, you’re making the problem real. Often admitting there’s something wrong in your life or in your behavior means getting over yourself. Letting go of your ego isn’t an easy thing to do.

3. You’re being vulnerable to a stranger.

Willy Wonka

I have major trust issues. There are very few people I trust enough to open up to, and they’re mostly in my immediate family. I have been betrayed by people close to me so many times in my life, I’ve developed a fear of sharing my feelings.

Opening up in therapy means getting over yourself and the fear of judgment. Speaking to a therapist, especially in the first few sessions, means exposing yourself to a complete stranger. Despite knowing about client confidentiality, I often wonder if the therapist talks about me to other people. I wonder if they think I’m crazy, or worse I wonder if they believe me.

4. You’re confronting your issues.

Prepare Yourself

Maybe you have problematic behavior that’s hard to come to terms with. Maybe you don’t want to admit to yourself you have a problem, let alone to a stranger with a notepad.

But more often than not, therapy sessions require you to rehash a hurtful past, and this often drudges up feelings you might have long buried. I often dread going to therapy because I know I’ll be emotionally drained by the end of the session.

5. You’re trying to change. Not sure if

Change is scary, especially if you’ve behaved a certain way your entire life. You’ve adopted coping skills that have helped in times of extreme stress or danger, and maybe those skills are no longer necessary. For me, I’m trying to work on my trust issues, assertiveness and perfectionism. These coping mechanisms have worked to protect me in the past, but now they’re interfering my life. Addressing these issues are hard and changing them is even more difficult.

So if you’re in therapy right now, I commend you. You are a badass.

This post was previously published on Mad Girl’s Lament.

 

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The Reason This Brave Woman Stripped in Public and Asked Strangers to Draw on Her

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Jae West stood in one of London’s biggest tourist areas armed with pens, a white board and a blindfold. The one thing she didn’t have? Her clothes.

West slipped off her dress, propped up her whiteboard on her shins and wrapped her blindfold around her eyes. She stood in Piccadilly Circus in only her bra and underwear with a sign that read, “I’m standing for anyone who has struggled with an eating disorder or self-esteem issue like me…to support self-acceptance draw a (heart) on my body.”

I was scared that no one was going to draw a love heart on my body and I was going to be left out there in the open in my underwear on show to be ridiculed,” West wrote in a post for Inspiralight, a blog that focuses on inspiring stories, adventures and social experiments.

West’s fears were calmed when one pen slid out of her grasp, and she began crying as a stranger drew the first heart on her body. While the whole experience was moving for West, she says her heart was touched when she heard a father explaining the project to his kids, telling them to appreciate the bodies they were given.

“If everyone could know and appreciate how beautiful they are from childhood I think this world would be a very different place,” West wrote.

The idea for this social experiment came from Amanda Palmer’s TED talk, “The Art of Asking,” where the singer-songwriting describes stripping down and letting fans write anything on her body. Inspired, West wanted to combine the vulnerability of nudity with self-esteem issues in a public place, and raise awareness for an issue that crosses all borders. Eating disorders affect about 70 million individuals worldwide, according to The Renfrew Center Foundation for Eating Disorders

“I knew this was a global concept that many people could relate to, so putting myself in that situation really was a stand for everyone out there that has been confronted with self-doubt in relation to the way they look,” West wrote.

You can watch the experiment below.

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Grieving Husband Plants 4-Mile Strip of Sunflowers Along State Road for Late Wife

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Along Wisconsin State Road 85, in Eau Claire, Wisconsin, a ribbon of sunflowers stretching several miles stands as a tribute to love and loss.

Don Jaquish lost his wife, Babbette, to cancer last November, KARE 11 News reported. Babbette loved sunflowers, and as a memorial to her after she passed, Jaquish began planting them along the road in a 60-foot-wide strip. Now, that strip stretches four-and-a-half miles long and crosses five farms.

He began the project a month after her funeral and neighbors allowed him to plant on their land, telling him to pay whatever rent seemed fair.

 

 

Jaquish’s tribute to his late wife is beautiful, but it also has a purpose — the sunflower seeds will be harvested and sold as birdseed with a potion of the money raised going towards hospitals, research and patient advocacy, according to the Babbette’s Seeds of Hope Website. The idea to sell sunflower seeds to benefit cancer patients was Babbette’s, and she convinced Jaquish to plant a whole field of them for this purpose a year ago.

She’s always loved flowers, but sunflowers were her favorite,” Jaquish told Kare 11 News. “They fit her personality. She’d walk into a room and her smile would light up a whole room.”

Watch the video below for more on the story:

 

Visit the Babbette’s Seeds of Hope Facebook page for more information. 

h/t Reddit Uplifting News

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Students Think Up Creative Products to Support People With Down Syndrome

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A group of students in the U.S. are working together to improve the day-to-day lives of people with Down syndrome.

On August 7-10, 2015, students from 28 colleges and universities met at Northwestern University in Chicago to brainstorm ideas for products and services that could benefit people who live with Down syndrome, according to the NU website. Nearly 100 students with varied academic backgrounds got together to address issues affecting people with Down syndrome, like employment, living options and the social isolation parents feel when their children are newly diagnosed, ABC News reported.

The program at Northwestern was part of Design for America, a network of students and community members who work together to improve society on a local and national level. Each year, Design for America students choose a topic where they feel they could create a positive social impact.

To better understand the needs people with Down syndrome face and what kinds of solutions would benefit them, the students talked with people who have Down syndrome and their families. Participants then worked in teams to address the concerns they learned about and devise solutions. On the last day of the program, the groups presented their ideas to business professionals and Design for America staff.

One team designed a series of dolls modeled after well-known people with Down syndrome, according to the NU website. Another came up with a game where children with and without Down syndrome try on hats associated with different careers to help instill the idea that children with disabilities can achieve whatever they want, ABC News reported. Other ideas included care packages for parents whose children were recently diagnosed and hygiene kits to help children with Down syndrome learn to take care of themselves.

“My biggest takeaway [from the event] would probably be that [people with Down syndrome ] are just all kids trying to do the same thing that we are, but they’re being held back by normal society perceptions about Down syndrome,” Amanda Kibbel, a student participant from the University of Oregon, told ABC News in the video below. “Really, [people with Down syndrome] can do the same things with just a little bit of adaption.”

Learn more about this story in the video below:

 

For more information about Design for America, head here.

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To the Parents Who Ask ‘When’ About Their Kids With Autism

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“My son is 4 and he still refuses to even try to use the potty and I was wondering when…”

“My kid started OT three months ago and my husband and I still haven’t seen any improvement so when…” 

“When did your Kiddo start eating? I swear I could deal with the picky eating if I just knew when it would end…” 

Every time I see “when” in a sentence about autism and a young child, I sigh. Not a “Gee, these people are so clueless” sigh. More like “Oh yeah, I remember when I still couldn’t let go of those milestone moments, too” sigh. Oh, newbies. Welcome to #TeamQuirky! A life where you learn schedules really can help your child with autism, and yet there’s no real set standard of one to follow. Come sit by me at this lunch table. I am part of your tribe.

I get it. Your little one is in front of you and you’re still consulting all your parenting books about what they should be doing at that age. You see the time slipping away from you. Why aren’t they following the instructions? You want to fix the problem. You’re running out of time!

Here’s the thing, sport. You must chill out. There’s a person who needs a time-out right now, and it’s you. I know, I know. You’re rattling off the screen right now about the importance of early intervention and how your child is falling behind and you have a limited window of time and yadda, yadda, yadda… I hear you. I know that song. Hell, I wrote that song. The milestones? The benchmarks? Guess who’s in charge of that? I’ll give you a hint: not you!

It’s your kid and yes, I know it’s super frustrating. They are the ones who ultimately decide anything. Any progress or growth, it’s all them. Pretty much the only thing you have control over is you accepting you don’t have control. So hang on to that if it makes you feel better. Otherwise, buckle up; it’s a hell of a ride.

The time you’re so hung up will go at the pace they set. Some of it will be fast. (Like my son, the Kiddo, figuring out how to scale the baby gates like it was his job.) Other times, it will stand still. (Usually mid-meltdown, when time stands still.) If you’re lucky, you might even get a sweet spot of time when they do stuff just like a typical kid their age. (Kiddo took to bike riding like water off a duck’s back.) Of course, the double-edged sword of that time is you will start to compare and contract everything else they can and cannot do and when they did it. Time is a real mofo like that.

There’s no set schedule to when things are going to happen for your kid and this life. I can’t tell you when things will happen for your kid like it did for mine. I also hate to tell you some of the stuff my Kiddo does, your kid might never do. However, that might be both good and bad depending on how you look at things. (Maybe your kid won’t think screaming like a howler monkey for fun and pleasure is good idea. I say you’re winning if that’s the case.) Likewise, I bet there will be things your kids will do that mine cannot and I’ll find myself wondering, “What did they do? If only I knew what it was so I could go back in time…” Yeah, ’cause that’s doable.

I think the band Styx said it best about time:

Is it any wonder I’ve got too much time on my hands
It’s ticking away with my sanity
I’ve got too much time on my hands
It’s hard to believe such a calamity
I’ve got too much time on my hands
And it’s ticking away, ticking away from me

So try not to get so caught up on the time factor and your kid. It will do you in. The only thing it’s time for is another side of fries.

Follow this journey on Autism With a Side of Fries.

Lead photo source: Thinkstock Images

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