Tuesday, January 17, 2017

6 Tips on How to Have a Chronic Illness on Social Media

Are you on social media? Of course you’re on social media; everyone is these days. But if you have a chronic illness, be careful not to post photos of you spending time with people you like, or even smiling. If you do, it could get your disability claim rejected.

Kayla Barry knows this firsthand. A few weeks ago, she shared the rejection letter for her disability claim. In it, the doctor assessing the claim stated that the photos shared on her Twitter account showed a “young woman who is engaged in life activities, awake, smiling and also do not appear to depict an individual who looks chronically ill.”

Cue all of us having a meltdown. About the fact that the doctor does not appear to be aware of the concept of invisible illness, which is odd considering he was evaluating the disability claim for Barry’s fibromyalgia and chronic fatigue syndrome, neither hardly visible. About the insanity of the doctor not realizing that we share our best moments on social media. And I could go on, but it’s not the point of today’s post.

My point today is to share some tips on what you can do to avoid being in the same situation.

Remember social media is public
This might sound ridiculously obvious, but the fact is that being on social media can feel very intimate. It’s just you and your phone or computer and some friends Liking your posts or leaving a comment. But what you do and say online is visible to all and yes, that even goes for your private Facebook account. If you don’t want the world to know about your private life, don’t go on the Internet. If you do, think of it this way: assume everything is public and don’t post anything you wouldn’t say in a large room full of strangers.

Assume you will be investigated
More and more, companies are checking the social media accounts of job applicants, and it appears the same goes for disability claimants. Check out that photo on Kayla Barry’s blog again. That doctor answered a particular question regarding social media accounts on the form they used for their assessment. That means it’s a standard part of investigating a disability claim.

Decide to be out or not
Make a decision about whether you will be “out” online about your chronic illness. There are good reasons not to be — perhaps you don’t want your employer or community to know, or perhaps you want a place where you can be on a sort of vacation from having an illness. On the other hand, being open about your chronic illness can be really helpful in terms of connecting you with people who can support you through it. Weigh the pros and cons and assess your risk of for instance, losing your job, and do what feels right to you.

Show the reality of chronic illness
If you are open about having a chronic illness in your online journey, show the totality of your life. There is much that is wonderful and you should absolutely show that, whether it’s big events like getting married or having a child, or the small moments of going out with friends. But also show the bad days or the consequences of going out, such as having to rest for a couple of days.

Get help with your disability claim
Most disability claims are rejected on the first go around, but you can increase the chance of being accepted. Involve an advocate or lawyer in your case to make sure that all the documentation is correct and the forms are filled out correctly. DisabilitySecrets is a great site with lots of information on how to maximize success when applying for disability in the US. It also has links to advocates in every state that can help you with your application.

Live your life
At the end of the day, you have to live your life in a way that feels authentic to you and that includes your social media presence. Be yourself, enjoy your life, post what you want to post. Because here’s the thing. As my parents told me a long time ago, I have a choice about where I spend this life with chronic illness: I can laugh or I can cry. It would be one hell of a waste of life if I spent it only crying out of fear that someday someone would have the profound stupidity to judge me only on my smiles.

Thursday, January 12, 2017

Quiet Thoughts

When last heard from, I was “enjoying” a bout of croup. It’s much better now, and but there are some residual effects. Namely that I can’t talk too much without getting very croaky and my voice hurting.

Yes, I did say that my voice hurts. I’m finding all sorts of new terminology as a result of this experience. Another one is that I have to find out where to hold my voice in order to prevent strain. Interesting times.

After trying to do some writing and having a normal day this Monday, my voice started hurting and it became very clear that I have to spend some extended time being quiet.

I am not fond of this. In fact, there was some significant flailing. Because what on earth am I going to do with myself? But also, and perhaps more importantly, I work freelance. There is no such thing as vacation time, sick time, or short-term disability. It felt really important to keep working so I could avoid the starving artist stereotype.

And then my brilliant sister smacked me upside the head with these five words:

“Your voice is your money.”

And she is absolutely right. As a writer who uses voice recognition software, my voice is crucial to my ability to work. Without my voice, there are no more books, no more freelance work, no more email. Taking some time off now may have a financial impact in the short term, but forcing through it risks my future.

So I am taking the rest of the month off from working and doing my best to speak as little as possible.

I’m open to ideas about how to entertain myself. What would you do if you had to stay quiet for weeks?

Monday, January 09, 2017

Building Self-Esteem When Your Body Betrays You

Chronic illness can impact your self-worth. In my new post for Mango Health, I write about how this happens and what you can do to build self-esteem:

"Your body is supposed to work with you. More than that, it should do what you want, smoothly and efficiently following the electrical impulses from your brain. It is the one thing in which you can have total confidence; the one thing that will never abandon you.

Except when you have a chronic illness or other medical condition. All of a sudden, your body is working against you, refusing to do what you want, and moving in a way that is anything but effortless. It is devastating. Instead of being able to rely on yourself, part of who you are abandons ship just when you need it most. It can feel like the ultimate betrayal.

A sense of self-worth is based in your image of yourself. When that image becomes fractured and broken, so does your self-esteem. When your illness affects your ability to do your job, be there for your loved ones, or heartbreakingly, even lift your toddler, how can you have any worth? And so, your self-esteem spirals down, making it that much harder to cope."

Read more about building self-esteem with chronic illness on the Mango Health blog.

Friday, January 06, 2017

Photo Friday: Christmas x2

It's still Christmas somewhere in the world, isn't it? This was supposed to go up last week, but croup got in the way.

It was wonderful to have some time off over the holidays and be able to focus on relaxing with family. We liked it so much that we did Christmas twice! First we had a grown-up Christmas Eve while the Tinks spent that holiday with their dad, and then we did it all over again with the kids. As you may have realized by now, Christmas is my favourite holiday and
the only way to improve your favourites is do them more often!

Isn't that how it works?

Somehow, we were all ready by Friday evening and Christmas Eve day was spent lollygagging and taking a lovely walk down by Sugar Beach. Which is beautiful in all weather.

This year we welcomed a new member to the Christmas family. Paul fits right in, as evidenced by him having fun with weatherstripping.

We call our traditional Christmas dinner The Best Meal of the Year and that's not just because of the food. 

After dinner, Liam and I created some hygge by the Christmas tree while he played an instrument the name of which I have forgotten, but it's from a video game. 

Where is Morgan? She threw everyone out of the kitchen so she could do the dishes. Really. And then she asked her mother if she could be allowed to do them the next day, too. We are trying to find out exactly what caused this, how to bottle it, and will offer the substance for sale as soon as humanly possible.

There was singing, as usual hilarious and joyful.

Ken was Nisse, suitably attired while distributing presents.

There was a bit of a musical theme, but we stayed away from instruments that would cause pain to listeners while the Tinks develop proficiency.

I hope your holidays were magical. Wishing all of you a very happy 2017!


Thursday, January 05, 2017

Empower Yourself with Chronic Illness in 2017

This year on RAHealthCentral, we are going to talk about empowerment and chronic illness: what it is, why it's important, and how to get there:

"Do you feel powerless in the face of your chronic illness and everything that comes with it? This year, we will help you transform into being empowered in your health care and your life!

Every year here on RAHealthCentral, we choose an overarching theme for the year. Not all of our posts will be about that theme, but it guides much of what we do. For 2017, we chose the theme of Becoming Empowered with a Chronic Illness.

What is empowerment?

The English Oxford Living Dictionaries define empowerment as “the process of becoming stronger and more confident, especially in controlling one’s life and claiming one’s rights.”

A big part of empowerment is the locus of control, that is, who or what is in charge of your life. When you live with chronic illness, it can feel as if control has been wrested away from you in different ways. The illness is in control of how you feel physically and emotionally at any given moment and sometimes, health professionals may not be particularly good at involving you in decision-making. Becoming empowered means taking back that control."

Read the rest of my new post on empowerment in 2017.

Wednesday, January 04, 2017

In which I Get Croup and Learn a Lesson

This is what it feels like to have croup:

Croup is terrifying.

Every breath is an effort. It starts by feeling vaguely short of breath, progresses to being aware of every breath, and then you start feeling the muscles and tendons in your neck as you take each breath and you begin to hear a noise called stridor as you breathe in. Oddly enough, breathing out is not an effort, but things get worse when you lie down. With each stage, the panic rises, your body instinctively kicking into hyper survival mode. It is not right to feel the effort that goes into breathing.

You can’t talk without coughing and your cough sounds like the bark of a seal. As the swelling intensifies, you have to take a long deep breath in to have sufficient air in which to cough. You can’t physically do the sniff it takes to smell something or get rid of a bit of moisture in your nose the structures in your body have changed. You can’t cry because that requires breath and a movement of your throat that you no longer can do.

Flashback city
The thing I have been the most scared of for the past eight months happened. My throat swelled, including my vocal cords. This is what happened on March 30 after I was extubated — my vocal cords swelled so much I had to have a an emergency tracheostomy. And it has been haunting me since.

By last Thursday, things had deteriorated from severe voice strain. I was reduced to only being able to whisper, the breathing was worse and so was the cough. Back to my doctor I went and she got out her blood oxygen metre. Thankfully, it was 98% despite everything, so that assuaged my anxiety a little. She also prescribed a burst of prednisone, some antianxiety meds, and lots and lots of steam.

Over the next four days, prednisone and steam worked wonders, but it didn’t help the flashbacks. This whole experience has been an intense trigger, both because of the symptoms and sitting in my doctor’s office with my blood oxygen metre on my finger. That happened back in March, as well. I don’t remember it, but I’ve been told the story. And now I had several days of being terrified that I’d wake up in February with a tracheostomy (or, let's face it, not wake up later).

Because that’s the fear. I don’t remember anything about that happened during the medical adventure back in March. Only not feeling well and then waking up with the trach. I was told that I had increasing problems breathing, but don’t remember anything about the experience. The Boy kept reassuring me that this, the croup, was entirely different and that I was not in distress the way I’d been before, but here I was having a hard time taking a breath and the flashbacks persisted.

Me waking up in the ICU with a tracheostomy. Medical staff telling me that every now and again, someone has to live the rest of their life with the trach. The overwhelming worry of how a permanent trach would impact being a writer who depends on voice recognition software.

Hello PTSD, my new companion.

Flipping the fear

Photo by David Govoni
I’m better now. My breathing is fine and as long as I keep the steam going, I don’t sound like a seal when I cough. I even have my voice back, although it gets very croaky very quickly when I talk. So I try not to talk too much (it took me three days to dictate this post). 

The sure sign that I’m on the road to recovery is Lucy’s return to normal. Since last Wednesday, she’s been glued to my lap and lying next to me in bed, watching over me. The last two nights she’s ignored me completely and gone back to sleeping in her box.

And somewhere in all of this silence, with all if this time to think, something occurred to me. That this was another type of illness that did not land me in the ICU. Another thing for which I had the remedy. Another infection that didn’t win. And knowing this made me feel stronger, pushed against the flashbacks and the triggers. And I took another step on the road toward my future.

I’m in for the long haul, but every time another virus doesn’t bring me to death’s door, I will feel a little more normal and in so doing, gradually reclaim my life from the maw of fear.