Writing about your disease is an experience that is both gratifying and freeing at the same time. At first, this task can be daunting because it is hard to know where to start. There is… More
How College Applications Helped Me Start Blogging About My Crohn’s
I had to start my common application essay, but I had no idea what I was going to write about. The most difficult part was that I only had six-hundred words to write it, so it had to be brief. I had a couple of ideas for what to write about, but nothing worked. It was a daunting task that made my heart race every time I thought about it. I had to display a piece of myself to an admissions committee that examined every word like a specimen.
Eventually, I haphazardly picked my disease to write about, since the deadline was approaching soon. However, I soon discovered that writing about my Crohn’s Disease was a lot more than just another essay.
My essay made me realize that my story mattered.
However, the essay was a starting point though. It allowed me to recall the events of my childhood that I would later write about in my blog. It gave me countless rough drafts to polish my message, which made me find beauty in my journey. I had a story to tell, and it was beautiful just the way it is. I did not need to embellish it with anything. I also realized that the beauty that I found in my story was actually pretty universal. It was a narrative that was common amongst many people, especially other chronic illness bloggers.
It made me realize that I needed to talk about it somewhere else
It would take more than the 600-word count to write about my experience; I needed an outlet. I had so much more that I had wanted to say about my illness; I wanted to help others through their disease. I wanted to actually raise awareness about it, and I realized that 600 words just were not enough. I can only say so much with the word count. When I blog, I can also reach out to others who are going through a similar struggle with my message. I realized that, unlike my essay, I could reach out to others on my blog. Thus, my essay could only be the starting point of my journey in disease advocacy, but I needed to continue advocating for my disease on a different platform.
I realized that I loved writing about my disease
When I wrote my first draft, words flowed off of my fingertips like water onto the keyboard. I could not stop writing about it, as the drafting process brought a sense of joy. When I started the essay, memories related to my IBD began to resurface. I began furiously typing on my laptop. I tried to capture every thought I had about my illness before they escaped me. Eventually, the memories resurfaced faster and faster, until I almost could not keep up with it. I could spend hours and hours writing about this topic. There was even an odd sense of closure that came with writing about this.
Writing about my disease in my essay was therapeutic too. It allowed me to confront emotions that I was unwilling to face. Moreover, I realized that blogging about it would give me a chance to digest my own journey too.
Blogging humanizes Crohn’s Disease
Sometimes, we like to think of diseases as a list of symptoms, as if the disease were an object itself. However, each disease is much more than that. Blogging helps us remember that each disease is more of a journey. With each illness, patients face struggles that only they can recount. Some of us face challenges behind closed doors in the hospital bed. Some even face challenges in their own mind.
My blog can be a window into my struggles that would normally be invisible to the outside world. It can allow those who do not have Crohn’s to better understand what life with this disease is like. Sharing my story also makes others more understanding of our struggles. Thus, they will not be so quick to shower judgment on us when we prioritize our health over others.
It reminds others that they are not alone in their disease. Others are going through a similar journey.
A simple post can be a powerful tool to raise awareness.
How to Better Navigate Your Chronic Illness
After your diagnosis, life becomes so much more confusing. You might wonder why any of this even happened or how you are going to live life after this. These questions are perfectly normal and won’t go away any time soon. They can’t stop you from living a productive life, so here are some tips to help you through the transition period!
Advocate for yourself
Do not be afraid to speak up. According to the Cleveland Clinic, you have every right to actively participate in your care. When it comes to school, make sure all your health needs are met through appropriate accommodations. You might need to apply for accommodations from your school’s disability office who will request proof of your disease/disability (a doctor’s note will suffice). More informally, you need to tell (or remind) your teachers of any needs that stem from your disease. For example, I still inform my teachers at the beginning of the school year about my urgent/unpredictable bathroom use in order that we can better work out a plan together (ie. not excusing myself before I go to the bathroom). An ongoing conversation can help prevent any misunderstandings that may arise.
In the doctor’s office, the key is to tell the whole truth and be as specific as possible. If you are having abdominal pain, point to which quadrant or area it hurts. If the pain is nonspecific, say it. What did the pain feel like? Was it dull, panging, or sharp? When describing poop or vomit, you want to note the consistency (texture), frequency, color, and the presence of blood (if any).
Have someone else advocate for you
You can bring a family member or friend to every doctor’s appointment. He/she can help advocate on behalf of you and ask additional questions you may not have thought of. Moreover, they can be an extra source of moral support, as it can be hard to open up about your symptoms (especially if you have chronic pain) to your doctor depending on your condition.
Look for indicators of a good healthcare provider-patient relationship. With your doctor, you should be able to:
- Address any medical or emotional concerns you have
- Be completely honest with them
- Take on an active role in your care
- Ask questions
- Give honest feedback
If there is a general breakdown of communication, you need to address it right away. It is better to discuss it sooner so that you can make the most of this relationship. Do not be confrontational in your discussion because an aggressive attitude will not change anything. It will only make you more likely to miscommunicate. Rather, start the conversation by asking: “Is there a way we can communicate better? I feel like we are misunderstanding each other.” The key is to promptly discuss any issues–patiently– with your doctor.
Pro tip: Try not to use email to discuss communication problems. When you send an email, you risk miscommunication. No one can read like facial expression or body language at the computer screen. Hence, you do not know how your doctor received your message.
Record your symptoms
Keep track of your daily symptoms in a journal or an app. By doing this, you can plan out what you want to discuss with your physician. Make sure to show the journal to your doctor because a symptom journal shows your progression every day. Therefore, your healthcare team will have a better idea of how you are feeling on a daily basis. For pain diaries, mention what you were doing right before each pain episode starts (or whatever symptom you’re recording) started. This way, it will be easier to identify any triggers.
Keep a diary
Let’s face it. You will face frustrations–and even grief–when you have a chronic illness. You can also use a separate journal to vent your illness related frustrations. It is a perfectly safe and healthy way to express yourself. Best of all, a journal fosters a judgment free environment since no one will read your thoughts. Research has shown that it can help minimize stress and help manage your emotional wellbeing. Do your best to journal each day. This way, you can regularly establish a routine to keep track of your emotions.
Keywords: Inflammatory Bowel Disease, IBD, chronic illness, spoonie, chronic, sick, Crohn’s disease, Crohn’s, Ulcerative Colitis, ill, illness, awareness, blog, chronic illness/IBD blog, IBD blog, chronic illness blogger, IBD or Inflammatory Bowel Disease blogger, IBD awareness, Collin Wong blog, wordpress blog, illness blog, awareness blog, Crohn’s Blog
How to be a Fantastic Chronic Illness Blogger
Blogging about your disease lets you and others around you understand the struggles you face better. It can be a chaotic yet cathartic experience. From endless blog post queues and emails, blogging can really be a lot–especially if you’re also dealing with a chronic illness.
The first few months will come with many roadblocks. For me, it was difficult to juggle my internship and college apps with my new blog. For others, it can be hard to find an audience. Long story short, getting started is usually the hardest part, so here are some ways to help you start strong!
Choosing the platform
Blogging can be a fun way to reach a diverse audience.
You want to start out by choosing the right platform for you, and I recommend WordPress. The Reader feature allowed me to network and connect quickly with other chronic illness bloggers. It can help your network grow quickly since you can easily search up bloggers and comment on their posts.
Other good options include: Wix, Squarespace, Blogger, Medium and Tumbler.
Know what disease blogging is about and plan your posting schedule accordingly
There are several purposes of disease blogging. Some want to raise awareness for a certain condition while others seek to connect patients to the right disease management resources. Most disease blogs actually do a mix of these two, so you want to plan your posts accordingly. There should be a good balance between the two. Dedicate some of your posts to the ABCs of your condition and write some other posts about possible patient resources that others can take advantage of.
Use Instagram
With Instagram, you are using visuals to raise awareness. Moreover, people spend 32 minutes a day on Instagram, which means less than a minute on each post. Hence, your message needs to stay concise.
Take snapshots of your life with your chronic illness and post them on Instagram! It can be a picture of you next to an infusion machine or an infographic about your disease.
Consider using infographics. For infographics, try to incorporate 4 or 5 numbers at most because too much information is visually overwhelming. Minimal infographics allow your message to still be effectively communicated.
Try limiting your captions to no more than 20 words since the picture itself should carry your message. Who wants to read an essay while scrolling through their feed?
Check out 5 these examples of chronic illness and disability instagrammers that I love!
Branch out
Because the disease blogging community has been steadily expanding, there are an increasing number of networking opportunities that you can take advantage of. Ready to offer your two cents on chronic illness? Consider becoming a contributor to The Mighty. This site contains the right audience already: people who want to read about chronic illness. So why not write for it? In addition, The Mighty is a great way to network with hundreds of contributors and bloggers on that site.
Since most articles published are opinion-based, get used to writing about your perspective on life with chronic illness.
Here are some sites to consider guest posting:
Don’t overdo it. Work around your health.
If you really are too tired or sick to write, don’t be that blogger who tries to push out one post everyday. While you do reach more people by doing that, you have to remember that you are juggling an illness with blogging and that health comes first. In fact, you might actually damage your health if you over-post, since publishing–especially for beginners–can be a very daunting and stressful process.
Instead, try to make a schedule that works for you. Don’t attempt to let your health work around your blog because it’s not going to happen. Posting daily may even ruin content quality since you have drastically less time to edit. Content quality is especially important in disease blogging because you are trying to advocate for a disease. You want that advocacy to be top-notch. It will only be effective if you spend enough time crafting your writing. Don’t publish first drafts; edit your article over and over until you are satisfied. You also want your advocacy to resound with a diverse set of audiences, so sacrificing quality for more views is not worth it.
Keep up with health-related news and blogs
Keeping up with health-related news can be a great way for you to get inspiration for your own articles. If you find a news story that particularly interests you, you can blog about your reflections on that story. Moreover, reading can educate you on what is relevant in the chronic illness blogging niche.
Got any tips you would like to share? Comment below!
This app lets you track your chronic pain and learn about it
This past year, I tried out a new app called Pathways, designed for chronic pain patients to help manage and learn about pain.
According to Sandip Sekhon, the developer, “Our mission is to reduce pain and suffering in the world. Here’s more on that: https://www.pathways.health/our-mission. We’ve now helped over 300 people reduce or get rid of persistent pain, and I feel like we’re only just getting started. For example, in the coming months, we’re adding medication & diet tracking, a physio & movement area, more content from experts in their own fields, and more!” He struggled with Repetitive Strain Injuries (RSI) for many years, so Pathways comes “from a very personal place.” Once he recovered from persistent pain, he found a new passion in doing “more for those that suffer from pain.” Sekhon remarks, “I wanted to create a product that would have been life-changing for me when I was battling with pain.” This program is tailored towards anyone who struggles with chronic or long-term pain.
When I open it, a daily pain tracker greets me, asking me about my current level of pain. A graph of my pain in the last seven days is also displayed along with a calendar. Pathways also contains podcasts designed to educate the user about pain science. They cover nutrition, physical therapy, guided imagery, visualization and mindfulness exercises too.
Originally, I was not a fan of the educational component, but it turned out that all the lectures were informative, simple, and thorough. The knowledge I gained from the podcast allowed me to destigmatize my own chronic pain. It is now a much more concrete concept that I no longer fear as much because I know knew why my pain was happening. Moreover, these lectures made me more mindful of certain habits that could exacerbate my chronic pain, so I now know what to avoid.
The second aspect I loved most about these lectures was their accessibility. You do not have to be a Ph.D. researcher or medical professional to understand this. These lectures are meant for everyone, regardless of their background. If a high schooler like me could easily grasp the material, I have full confidence that you will too.
Most apps for chronic pain revolve around pain tracking and diary entries, so the podcasts really defined this app. I will definitely keep this app after I review it because I could really see how this program could help put someone on the right path to recovery!
Aside from podcasts, the app contains brain retraining tasks, meant to help users overcome their fear of chronic pain. This type of fear is very common, as the pain we feel is often debilitating. Hence, we want to somehow psychologically avoid it, but we can’t. Ultimately, these brain retraining sessions helped me overcome the fears that I personally have about my chronic pain.
I also found this app to be pretty user-friendly, as I was able to figure out how to use it within the first day of download. I could tell that the developers really kept the user in mind. The low learning curve is good for people who live with chronic illness because we constantly function on low battery mode.
In a lot of ways, Pathways is akin to a virtual therapist, but cannot in any way be a substitute for traditional pain therapy.
Pathways is definitely an up and coming app that everyone with chronic pain must add to their self-care routine.
*I was not financially compensated for this post. I downloaded Pathways for review purposes. The opinions are completely my own based on my experience.*
Breaking Stigma: An Interview with Sheryl Chan
Sheryl had a mini stroke at 14 and was diagnosed with Antiphospholipid syndrome (APS), a blood clotting disorder. This led to multiple life threatening blood clots, which further led to the development of other chronic illnesses. She blogs and shares the stories of others in hope that others will also raise awareness on these rare conditions. She hopes to let others who are suffering know that they are not alone. Check her out on A Chronic Voice!
Thank you so much for taking the time for this interview! Besides Antiphospholipid Syndrome, what other illnesses do you live with?
I also live with Lupus (SLE), Sjögren’s Syndrome, Epilepsy, PSVT (Paroxysmal supraventricular tachycardia), and MVR (mitral valve repair).
Why did you create this blog? Was there a specific watershed moment that led you to start?
I created this blog to articulate what living with lifelong illness is like from multiple perspectives. I also enjoy writing, and thought I’d channel that energy into doing this.
Tell us what was going through your head when you first decided to blog.
I knew that I like to write, and I have so much I want to share about chronic illness.
Was your illness a major fear when you started?
If you mean being open about it on my blog, not at all.
How is your blog related to your illness?
My blog covers a few different topics. I talk about my own experiences with my chronic illnesses, mental issues, and how I cope with them. I am also always open to having others with various illnesses share guest posts on my blog. Finally, I also cover general health and wellness topics from time to time. My goal is to increase empathy within society through education and awareness.
How did you choose your blog name? What’s the significance behind it?
My tagline is ‘articulating lifelong illness’ since I believe that every single voice counts. ‘A Chronic Voice’ seemed to fit!
Walk us through the process of choosing a topic for your first post.
I had a lot I wanted to share over time, but I thought it best to start with a bit of my life experiences, so people knew who I am and where I was coming from.
Did you foresee any potential difficulties?
As I work in web development, I wasn’t too worried on that front. But I saw marketing and growing an audience as something a little more difficult.
Now that you actually started blogging, What challenges and constraints did you face? Did they match or defy your initial expectations?
There were more challenges than I had anticipated. Blogging encompasses a very wide range of tasks and isn’t just about ‘doing one thing’. For example, it goes beyond just ‘I just want to write’. In order to maximize your reach, you need to also have some good pictures, social shares, interactions, analytics, etc.
How did you overcome those initial roadblocks?
I gradually stopped working full time due to ill health, so I had more time to work on these things slowly at home.
What challenges still remain?
The amount of prep-work required to get a blog post published is definitely a lingering challenge.
What does a typical day look like for you?
I tend to need a few hours in the morning for my body to “warm up.” I wait for breakfast, coffee, and meds to kick in. Then I start working on computer-related tasks where I work on either paid projects or my own blog. I also let my birds out of their cages and fly around. Then if I feel well enough, I start household chores from 4pm and onwards.
Could you give us some tips on how to balance blogging with your illness?
Ha, I don’t do this well at all. I tend to be all or nothing, so I typically blog all day today and rest all day tomorrow. With work back in the mix now, it gets trickier for me.
What resources do you use to help you manage your blog?
Google Docs, Instapaper, Canva, Unsplash, WordPress plugins.
Which ones are most effective? Do you have a favorite one?
No favourites here. They all play different but important roles!
Is posting consistency a problem for you? Please talk more about that.
It wasn’t a problem because I wasn’t working full time. I also have a publishing calendar and drafts queued, so usually there’s something new to post every week. Now that I’m trying to take on more paid work again, but this is getting a little tougher. It probably also has to do with me wanting a post to always look ‘complete’ from head to toe, so that doesn’t help!
What impact did your blog have on the community around you?
People knew I was sick, but not exactly with what, or how exactly it impacts my daily life. Now it’s like an open topic, which I don’t mind at all. It helps to bridge connections with others who are ill in silence, and breaks the stigma surrounding it.
On the greater online community?
It seems to provide inspiration to most people, which surprises me because I’m not the most positive person! Being able to relate to an experience or emotion is also comforting both ways.
Tell us how your life has changed since you started blogging about this disease.
Whilst I started blogging as a cathartic process, to raise awareness and reach out to others, surprisingly, I am also benefiting from the writing process in return. I have learned things about myself with the thinking processes and reflections, and it has actually made me more self-aware.
I know you are really involved in Chronic Illness Bloggers, an online community that helps chronically ill bloggers network and collaborate with others. How did you find out about this opportunity? Why did you decide to get involved?
Julie, the previous owner of CIB, approached me on Twitter. I was fairly new to the health blogging scene then, so I joined. Over time, it became my favourite network for a number of reasons – the consistency, community, writing opportunities, knowledge sharing, and people I’ve come to know and became friends with.
4 Simple Ways to Conquer your Summer With IBD
IBD sucked the fun out of my summer since it was a tug-of-war between summer fun and disease management. Here are some ways you can still make the most out of your summer with IBD!
Go for a fundraiser walk. The Crohn’s and Colitis Foundation has numerous fundraising events that you can take part in this summer. Fundraiser walks and marathons are great opportunities to meet other IBD patients and stay active. From 5k walks to education events, the Crohn’s and Colitis Foundation of America has a wide spectrum of activities that you can choose from.
Start your own fundraiser. Running fundraiser can be a great way to raise both money and awareness for IBD. Contact your local hospital and see if you can partner with them to create a fundraiser. While this does require some planning and basic organization, this can keep you busy during the summer without spending too much energy.
Figure out where the donations will go. Perhaps the money could go towards that hospital’s IBD research. Maybe the money could also go to the Crohn’s and Colitis Foundation.
Appeal to the reader’s emotions. Your narrative needs to convince the reader why they need to donate and why your cause is relevant. You can explain that there is no cure for IBD, so it is important and urgent to fund IBD research. Make sure to tell your IBD story.
Here’s a sample from mine: “In kindergarten, I lived with unexplained abdominal pain and vomiting for a year. Between the frequent trips to the bathroom and the vomiting, I could not comprehend my situation. Concerned, my parents took me to a gastroenterologist. I sat in my GI physician’s office, waiting apprehensively for a diagnosis while he discussed the latest lab results with my parents. My mind was focused on the painful knot forming in my stomach. When I heard the word “disease”, I did my best to pay attention to my physician’s voice. I struggled to comprehend my diagnosis; I knew I had abdominal pain and vomiting, and that Crohn’s Disease was the cause. I found out I had a chronic disease.”
Choosing a platform is also really important. Consider using Gofundme or Facebook. Plus, both platforms have immense web traffic, so your fundraiser can be seen by others–not just your friend circle.
Check out this fundraiser that I did.
Practice good food safety. Summer is the perfect time for barbecues, but foodborne illnesses are also rampant during this time. IBD and food poisoning combined could be a potential recipe for disaster, as you will have to manage the effects of two GI illnesses at once. Moreover, one study from NYU Langone Health has shown that GI infections are a complicating factor for IBD. To avoid compounding illnesses, consult the Foodkeeper App for food and beverage storage information. It tells you exactly how long you can safely store a food product, so use this app before you go on your next summer barbecue.
Some foods to look out for are:
- Potato salad
- Raw fish
- Avocadoes
- Hummus
Adequate fluid intake. Adequate fluid intake is especially important in ileostomies users because they are often more prone to dehydration. Hence, it is especially important to track your fluid intake.
Trying using an app to help you keep track of your daily fluid intake. I used the WaterApp. This app can help you be more mindful of the amount of water you drink. Click the + button for each cup of water you drink. You can 8 custom reminders that remind you to drink water. The only precaution is that ostomy users often need more than 8 cups of water. After those 8 cups, you can use a tally system to record additional fluid intake.
Stash multiple water bottles in your bag before leaving the hotel. As bottled water is often overpriced at tourist hotspots, you may not have enough water while you are traveling. Bringing your own water bottle can help you stay hydrated anytime free of charge.
On the flip side, drinking water may not be enough for ostomates, so you might have to make your own electrolyte drink. Here’s what the United Ostomy Associations of America recommends.
Got more tips you would like to share? Comment below!
Keywords: Inflammatory Bowel Disease, IBD, chronic illness, spoonie, chronic, sick, Crohn’s disease, Crohn’s, Ulcerative Colitis, ill, illness, awareness, ibd blog, chronic illness/IBD blog, Collin Wong IBD blog, chronic illness blogger, IBD or Inflammatory Bowel Disease blogger, IBD awareness
Face to Face with Becca Pava: Empowerment through blogging
I had the privilege of interviewing Becca Pava. She is a young adult with an online bachelor’s degree in writing and works as a freelance author. Suffering from a host of severe illnesses since the age of 10, she hasn’t been able to physically attend school since the age of 12. Becca basically grew up in the hospital and is currently bedridden. She is on constant IVs, oxygen, drainage bags, and a suprapubic catheter. Despite all of these obstacles, Becca keeps her hopes and dreams afloat by writing. She reaches out to others in order to change lives and the world around her–one reader at a time.
She has small fiber autonomic polyneuropathy, gastroparesis, global dysmotility, seizures, brain tumor, diabetes insipidus, asthma, gastroesophageal reflux disease, hypothyroid, orthostatic hypotension and cardiac arrhythmias.
Tell us how you started your blog.
I was feeling completely overwhelmed with the medical trauma I experienced, and I needed a way to vent. Moreover, writing has always been extremely cathartic to me, so I started writing. After reading what I had written, I realized that other people with similar experiences probably felt very alone (my disease is extraordinarily rare). I turned one entry of writing into a blog and began posting regularly.
What was going through your head?
I knew I would love to connect with others. I also figure if lay people read my blog, they could better understand me and stop making hurtful comments.
Was your illness a major fear when you started?
Yes and no. Because everyone thought I was imagining my gastroparesis, getting the diagnosis was a relief. In contrast, my brain tumor diagnosis was initially comforting, but as testing and the neurosurgery grew closer, I felt like the Titanic approaching the iceberg.
How is your blog related to your illness?
My blog is memoir style. The first entry tells the story of my descent into gastroparesis. Everyone thought that I had an eating disorder until I developed a bezoar and subsequent bowel obstruction. As a result, a gastric emptying study was performed and showed severe gastroparesis. The later blog posts tell my story and how I manage these illnesses.
How did you choose your blog name? What’s the significance behind it?
I chose Chronically Alive because I’m chronically ill, but I’m also not giving up and dying. The doctors never expected me to live into my twenties. Yet here I am, chronically alive.
Walk us through the process of choosing the topic for your first post
My first post talks about my infancy until my first hospitalization at age ten. I chose to start at the very beginning to reveal that my chronic illness started extremely early on, as early as age eight if not sooner.
Now that you actually started blogging, what challenges and constraints did you face? Did they match or defy your initial expectations?
The hardest part about blogging has nothing to do with writing; the hardest part is figuring out the technical aspects. I had to figure out how to set up the blog, how to add pictures in, how to add links in, and how to set up a theme. It was definitely a little more complicated than I expected.
How did you overcome those initial roadblocks?
I ended up doing a lot of YouTube and internet research as well as taking a blogging class through Gotham Writers.
What challenges still remain?
The biggest challenge that remains is that I don’t like the summary I have on my blog, but I don’t know how to change it.
What does a typical day look like for you?
A typical day for me consists of having one of my morning shift aides wake me up, disconnect me from my IV lines, do my IV push meds, get dressed, do my J tube meds, hook up to TPN in one lumen of my Hickman, and saline in the other and wait for an ambulance ride to one of my millions of doctors appointments. I then come home, snuggle with my fiancé in my hospital bed that’s pushed up next to his queen size bed, work on my blog, read, write, repeat, Facetime friends, then my afternoon shift aide gives me a bed bath, empties my catheter bag and g tube drainage bag. I work on my blog, read, write, then my evening shift aide gives me my IV push meds, then my J tube meds, then I snuggle with my fiancé. We watch a movie together and go to bed.
Could you give us some tips on how to balance blogging with your illness?
I’m in bed all day, so I just pace myself. I write when I feel semi-okay to good. I push myself to write because writing helps me feel better. I bring my laptop with me in the ambulance on long rides and take advantage of any free time to blog.
What resources do you use to help you manage your blog?
I use Google’s search engine a lot, as well as Verywell.com. I also use WordPress as my blogging platform.
Which ones are most effective? Do you have a favorite one?
My favorite resource is probably Verywell. They have a lot of really solid, easy-to-understand medical info to use as links in my blog.
Is posting consistency a problem for you? Please talk more about that.
Posting consistently is not usually a problem for me. The only time it gets to be a problem is when my fiancé, who is also quite ill, is in the hospital. I can’t focus on anything else.
What impact did your blog have on the community around you?
My blog has made people around me who read it much more understanding and patient with me as a person.
Impact on the greater online community?
The online community that has read my blog seems to have a better understanding of how serious and life-altering gastroparesis can be. I started talking about my dysautonomia and brain tumor, and I think it will have a similar effect.
Tell us how your life has changed since you started blogging about this disease.
Ever since I started blogging about my diseases, I’ve felt very empowered and in control of my life. I finally feel like I’m making something good come out of this terrible mess I’ve been dragged into. That’s a really refreshing feeling.
Encouragement through Blogging: An Interview with Carole Griffitts
This month, I interviewed Carole Griffitts. She has lived with invisible disabilities for over forty years and has a husband named Joe. They have been married fifty-two years, and he is her biggest supporter and provider of care for her. They have two sons who are professionals, happily married and have seven kids between them. Check out her blog, Navigating the Storms!
What illnesses do you live with?
Dystonia – several kinds; post-polio syndrome; Sjögren’s syndrome; and various neurological issues due to the interaction of these three.
What is the purpose of your blog?
I had a twofold purpose for this blog. One was to provide encouragement for and information about invisibly disabled people. The second purpose was to create a platform for the book that my husband and I are co-writing for the same two purposes.
What did you think of when you first decided to blog?
I don’t know how to do this! Being very meticulous, I decided to research writing a blog and discovered that my library offered a free Internet course about that. So I took that and felt much more confident.
Did your illness hold you back when you first started blogging?
Yes, because fatigability is probably my biggest problem, followed by injury muscles when doing too much.
How is your blog related to your illness? *
My illnesses are considered invisible disabilities. A decade ago, no one knew what those were. Most people still do not understand, so I wanted to help people learn about them so people could help friends out, or at least accept their differences.
Could you please explain your blog title?
To me, storms exemplify what my life is like. Navigating refers to how to live despite the storms.
Walk us through the process of choosing the topic for your first post *
My first couple posts, which are no longer available for viewing, dealt with previewing the coming blog. My first two real posts dealt with explaining invisible disabilities.
What potential difficulties did you anticipate? *
My biggest fear was finding viewers. Still is. I knew I did not have much time to put into blogging, so I only post a blog once every two weeks on Fridays. However, I am faithful to do that even if it’s just to say I’m too sick to blog. Or I post a guest post.
What difficulties still remain?
Actually, my blog is more of an actual website with pages of information about the subject. In the beginning, it was quite a challenge to get up to pages of information as well as a blog. It was even more difficult than I had expected.
Could you give us a glimpse into your daily routine?
A typical day for me involves alternating periods of activity with time recovering in my recliner. I’m only able to spend 2 to 3 hours writing, split between the book and the website. There is not much time left for ADL!
How do you balance blogging with your illness? *
My health comes first – at least usually. Currently, I’m in a flare of pain going on six weeks. Flares are not unusual; six weeks is. Listening to my body is the key.
Any resources that help with blogging?
A Facebook blogging group. Co-Schedule’s Headline Analyzer. A database in Access where I keep track of SEO terms, graphics, categories and tags, and colors used. I wish I had started that sooner because now I’m going back to pick it up and that’s a pain. Otherwise, though, I could not keep track of how much or how little I’ve used this or that. I write in Scrivener.
Which ones are most effective?
Scrivener and Headline Analyzer
Is posting consistency a problem for you?
Not really. I just do it. I do plan ahead for when I will be gone.
How did blogging change your life?
Because of online communities I belong to, I have become much more aware of how many people are affected by invisible disabilities. I have also seen that many people seem worse off than I am. I have become more focused in order to be able to do all this writing.
5 Foolproof Ways to Deal with Dietary Restrictions
I decided to write a post about Inflammatory Bowel Disease, since it’s IBD month right now! Dietary restrictions are a normal part of life with IBD. What frustrated me was the few choices I had. I felt trapped: my friends were able to eat whatever they wanted to. They could grab something off the shelf without reading the ingredients label, while I had to meticulously scan it multiple times before gingerly placing it in my cart. To make matters worse, I would have to bring my own snacks to birthday parties, so I would not be completely left out. I always wondered why my food looked different; the party is never the same if I cannot eat anything there. If your dietary restrictions are here to stay (like mine), here are some strategies to deal with them!
- Make a list: Bring it with you wherever you go because it will make grocery shopping much easier. That way, you can conveniently compare the ingredient label to your list. This list should be exhaustive; leave nothing out. I like to make my list on the Notes app, but I don’t just keep it there. I copied it onto my computer hard drive and Google Docs in an effort to establish a semi-formal database that I can email to family members, parents, and friends.
- Communicate: Thoroughly explain/share your restrictions to people who cook for you. Hence, they can take your restrictions into consideration when planning for the food at a party. This strategy makes everyone more accommodating and helps you avoid those awkward moments when you can’t eat anything at the party. Talking about your dietary needs usually involves an explanation of your condition(s), so this could also be an to spread awareness.
- Be willing to try new recipes: Let’s face it. They are called restrictions for a reason. The objective is to have as many combinations as possible. Online recipes are a great resource for this since fewer options does not mean that you can’t have fun with cooking! Look up different recipes each week, and try them out! Learn new cooking techniques! Pinterest is great for this because there are many other bloggers who post about their dietary restrictions on there. Actually, Pinterest is where I get most of my salad dressing recipes. They might have some delicious recipes to suggest that work with your restrictions!
- Think of this as a learning opportunity: This is a chance to learn new recipes and adjust to a new lifestyle. Your new dietary restrictions may force you to try new foods because you will have gaps in your caloric intake. Finding food substitutes are a must. I personally had to start using ingredients that I never thought I would try. I found that aspect the most rewarding part because I was actually expanding my options despite restrictions.
- Accept it; you will be frustrated at times: Having dietary restrictions means that you will be left out. Your friends may order a shared dish that only they can eat. Put the situation into perspective: It’s not the end of the world if you can’t have that dish. Will your friends magically disappear? No. Will they hate you for ordering your own dish? No. Even though it may be tempting to try, do NOT try it.
Got any tips you would like to share? Comment below!
On Balancing Chronic Illness & Vlogging: An Interview with Jenni Pettican
Jenni Pettican is a 23-year-old chronic illness vlogger with Ehler Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). She is a drama student and radio presenter who shares her story of trying to face university and post-uni life with chronic illness. She also loves spreading awareness and helping her community. Check out her channel!
Why did you create this blog? Was there a specific watershed moment that led you to start?
A friend of mine told me that I should, so I did it as a bit of a secret New Year’s resolution. It’s the only one I’ve ever kept. I started out sharing recipes and talking about diet changes, but now I love helping others and spreading awareness through sharing my story.
What value does sharing your story hold?
Sharing my story is valuable because it helps others living with EDS and POTS. In fact, storytelling is really my main goal for everything I do as an advocate. It also allows me to make doctors and the public more aware of how these conditions really affect people. Hopefully, my story makes them think twice about their actions. I also hope that in sharing the not-so-good-parts, my struggles with EDS will become more noticeable, so that others with EDS will not have to endure the same struggles.
Tell us what was going through your head when you first decided to blog.
I was thinking of helping other people. Helping friends and family understand what I was going through without having to explain a thousand times. Helping others with my conditions, so they didn’t have to go through some of the awful things I went through.
Was your illness a major fear when you started?
Definitely. I was having multiple surgeries. On top of that, I had to leave uni and didn’t know what my future was going to hold.
How is your blog related to your illness?
I raise lots of awareness and share various stories. I hope to start raising awareness for other conditions one day.
How did you choose your blog name? What’s the significance behind it?
Originally, I was 1nvisibl3 Girl because I was lonely and invisible. I eventually changed it to Chronically Jenni to make it clearer and cleaner.
Walk us through the process of choosing the topic for your first post
My first post on my blog was about ‘coming out’ as disabled and telling the world what I’ve been through, but the writing got difficult for me. I started vlogging, and my first real video was for Rare Disease Day.
Did you foresee any potential difficulties when you first started vlogging?
When I was a young teenager, I used to post singing videos on YouTube. I thought I was great. Although I wasn’t bad, I was mediocre at best. I also got horrific comments and online bullying. Because of that experience, so I was terrified of the hate I might get. Thankfully, *touch wood* I’ve not had any nasty comments.
Now that you started vlogging, what challenges and constraints did you face? Did they match or defy your initial expectations?
Time and energy. I don’t think people who don’t vlog/blog realise how much time vlogging takes–especially editing. And when you’ve got a condition which involves chronic fatigue and are juggling a degree and radio shows, it’s difficult to post content.
How did you overcome those initial roadblocks?
I tried to set a schedule, but I did not feel too bad about uploading late.
What challenges still remain?
Getting content out on time. With my mum’s awful Internet connection, publishing vlogs is a constant struggle.
What does a typical day look like for you when you’re vlogging?
Right now, a lot of university work, as I’m finishing my degree. I’ve just started getting back into regular physical therapy to improve my strength. But I vlog every single day. For the 65 weeks I’ve done that, there have never been 2 days the same!
Could you share your favorite daily vlogs with us?
I really love last year’s EDS Awareness Month videos, and I’m currently in the process of getting as many EDS and Hypermobility Spectrum Disorders (HSD) sufferers together again to be in this year’s. My video, “Worst Symptoms of EDS,” has the most views on my channel. My favourite video is “Staying Positive Despite EDS,” as I was so proud and happy of what my wonderful dazzle had achieved despite this condition, and they weren’t letting it hold them back.
Could you give us some tips on how to balance vlogging with your illness?
I’m definitely not a master of this especially with so much else going on, but I try to set aside a Sunday night for editing. If I’m not well, there’s my Monday morning fallback, but then I don’t feel bad about getting behind. Most in my community have illnesses, so they totally understand. I always try to let them know in advance if I can…I do get some emails asking if I’m alright, which is lovely!
Is posting consistency a problem for you? Please talk more about that.
It’s a balancing act. At the moment, my degree has to come before my videos, but you never know! There might be a time one day in the future where blogging could become a job, and I can find a better balance.
What impact did your channel have on the community around you?
My friends always love getting involved! The people I’ve met doing this are incredible and are some of my closest friends.
Did your channel have an impact on the greater online community?
I’ve got a little support group started now: a brilliant community of people who watch my videos and are the best at supporting me. I hope that I help them! I hope my videos can go far and wide, so these conditions are more well-known, and people can get the help they deserve.
Let’s focus on you. Tell us how your life has changed since you started blogging about this disease.
My health has been up and down like a yoyo– that’s for sure. It has given me the best friends and support network; I can show others that that’s okay. People have been more understanding than I expected! And it’s always nice to go to events and get recognised from my videos.
Check Jenni out on her YouTube channel for more daily vlogs!
Collin’s IBD Chronicles 
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