messages received on sarahah

What Happened When I Joined 'Sarahah' as Someone With a Chronic Illness

1
1
0

When I saw the first Sarahah link on my timeline, I cringed. Not because I didn’t like the idea of being able to send people anonymous messages and feedback. It’s neat. I loved that I could give people positive comments without them knowing who it was. You could even help your friend realize how much they mean to everyone.

 

That being said, could you imagine the nasty remarks I might get if I made my own account? The fact is, anonymity makes bullying easy. I’ve seen so many of my friends get horrible messages and told myself I wouldn’t put myself in that situation. After all, between my depression, anxiety and issues related to lupus, I assumed most wouldn’t have anything nice to say. I can give you a list of comments I expected to receive:

You never have time for anyone.

You don’t leave the house much.

You’re cranky and depressed.

You need to shut up about healthcare.

You’ve let yourself go.

You cancel plans too much.

You’re too young to be this sick.

You’re too strict with your son.

I could keep going because I can only look at myself through my own eyes. I can only see my flaws. In a way, I could only see what my health issues have made me in recent years. After a week of seeing all the posts about it, I jumped on the bandwagon. Why? Who knows? I don’t regret it. While my link hasn’t been on my profile more than 24 hours and I don’t have many replies as I posted it a bit late, all of my replies made my month a lot better.

The messages ranged from “You got me to start reading! Thanks!” to “I think you’re pretty spiffy.” More than a few I knew instantly by the wording, but we hadn’t talked in years. It made me smile knowing distance happens, but they’re still there. Some made me cry, though not for malicious reasons.

messages received on sarahah

While Sarahah does allow for online bullying without difficulty, it made me more thankful for my friends. It showed me I have a group of fantastic people on my team. While I may beat myself up for problems I can’t control, the people I surround myself with see the best in me. They’ve helped me realize I’m too hard on myself. This bit of information was something I honestly needed, even if the “confessors” didn’t know what was going on in my life. I went in expecting the very worst, but I found that people can surprise you.

We want to hear your story. Become a Mighty contributor here.

1
1
0

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

Living the 'Con-Life' When You're Chronically Ill

37
37
1

We’re getting ready to head out to Boston Comic Con and I can’t wait. My family and I love attending Cons and I’ve noticed that Cons can be a haven for the disabled and chronically ill. Think about it – for those of us who take dozens of medicines a day just to stay alive, the idea of magic potions that can cure all is an incredible concept. For those who struggle to walk, flying is a dream. For those with anxiety and depression, the idea of having super strength or being invisible is a panacea for the pain and fear they experience daily.

family posing with john barrowman at comic-con

For someone like me, battling lupus, fibromyalgia, Hashimoto’s thyroiditis, asthma and a host of other “party favors” that accompany autoimmune disease, my own body is literally attacking me. Yup, I’m a body at war with itself. To keep things “in check,” I take powerful medications, even chemotherapy, to suppress an immune system run amok. And, have I mentioned – there is no cure. For someone with autoimmune disease, where a simple cold quickly turns to bronchitis and pneumonia, the idea of being bulletproof, indestructible, invincible is the answer to my prayers.

Is it any wonder many of us flock to a world of fantastical creatures, fairytale realms, superheroes and aliens? When you spend so much time living in your own personal hell there is something so freeing about the world of futuristic and fantasy. Dress up as your favorite character and live out your dreams, if only for the day. I’ve seen some brilliant cosplay where people have incorporated wheelchairs and walkers. One of the best I saw was a young woman who built a TARDIS (the time traveling spaceship from Doctor Who for those of you who don’t speak geek fluently) around her electric scooter.

That brings me to accessibility and Cons. Attending a Con can be physically demanding, so it’s best to be prepared. Since most are held in large venues, it’s best to do your homework before attending. Print out the schedule and map and do your research for the shortest routes  and where important things like bathrooms and elevators are located. I’ve found that Cons also have ADA accommodation procedures – everything from special seating to wristbands allowing early access to lines to cards you can have signed to avoid wait times in lines. Check the website ahead of time and don’t be afraid of using the accommodations if you need them.

If you’re like many of us with “invisible illnesses,” we worry about being judged and how people will view us when we use the very accommodations we need. Please learn from my mistakes and don’t! We recently attended Awesome Con in DC and it was as awesome as the name implies, but I greatly underestimated how huge the venue was and just how much walking would be involved. Throw in a hot, muggy June weekend, tons of “hurry up and wait” which is common for pictures and autographs and by Sunday I was hurting big time and beyond exhausted.

family with tom hiddleston, chris evans and chris hemsworth at comic-con

Being a little (OK, a lot) stubborn, I hadn’t packed a cane, let alone my rolling walker and certainly hadn’t gotten an ADA bracelet, as I was feeling too “good” (which can instantly turn to “lousy” with just the slightest bit of overdoing it which I know but still ignore sometimes – did I mention that “stubborn” streak?). I won’t bore you with the details, let’s just say that within a few days of returning home I was in the ER, on antibiotics and in a bad flare. Moral of the story: next time, take the cane, leave the cannoli (or something like that).

So, to help others prepare for the Con-life (very different from the con-life), here’s my handy, dandy packing guide:

1. Water and refillable water bottle. Lines for food and drink can be extremely long and everything expensive. Hydration is key and many times panel rooms have ice water containers you can refill at.

2. Speaking of food…bring healthy snacks to keep you going. Have I mentioned the food lines and prices? Granola bars, raisins, squeezable applesauce, Cliff bars, all easily packable, non-perishable and can keep you going. Often the food choices are typical fast food “junk” so if you have dietary issues this is especially crucial. You can go out to find food but wait times are long and that adds extra walking to your day so…

3. Super comfy walking shoes. No matter how much you think you will be walking/standing in lines, multiply it by five! Chairs in common areas are few and far between and Heroes and Villains Fan Fest is the only Con I’ve come across that has chairs specifically labelled for disabled access only. (If you know of others, please comment below!)

4. Layers of comfy clothes. Temperatures can vary greatly from room to room and if you have trouble regulating your temperature, like I do, I find being able to add or shed a layer helps a ton.

5. Wet wipes and hand sanitizer. Lots and lots of germs. ‘Nuff said.

6. All emergency meds, clearly labeled, along with a list of all meds, emergency contacts, doctors, medical conditions – anything you need to keep you safe.

7. Something to organize your schedule, photo ops, autographs, pictures, etc… For those of us who battle brain fog, trying to keep track of everything with all of the chaos and excitement going on can be really tough. I’ve found taking a picture on my phone of when different things are taking place (panels, photos, autographs) can help me keep track and have everything together. Luckily, some Cons now have apps you can download to help manage the different panels and schedules so that’s helpful, too.

8. Your sense of humor and as much patience as you can muster. You’ll need both in abundance to get through.

family with david tennant and cast of doctor who at comic-con

Several celebrities have begun speaking out about their struggles with mental health in recent years, helping to reduce the stigma and even raise funds and awareness. Wil Wheaton, best remembered for his cinematic turn in “Stand By Me” and time on the Starship Enterprise on “Star Trek: the Next Generation” now has a successful second act hosting gaming shows on Geek & Sundry, but his many people flock to his panels to thank him for his candid, raw blog posts, tweets and talks about his battles with depression and anxiety. Jared Padalecki, a.k.a. Sam Winchester on “Supernatural,” created his own non-profit organization, Always Keep Fighting (#AKF), to raise funds, awareness and support for those fighting depression and anxiety. He frequently talks openly about his struggles and thanks his fans for their support. His friends and colleagues in the “Supernatural family” (other actors on the show) have even joined in, creating an organization to train crisis counsellors to man a help center for those dealing with mental illness.

Comic cons are often the haven for the outcasts, the outsiders, the geeks and the odd ones (my people!!). Is it any wonder those of us with chronic illness feel so at home there as well? Yes, they can be mentally and physically draining, but so worth it. Most of all – remember to have fun! You meet some of the kindest, warmest, friendliest people at Cons. I have found the people I’ve met to be extremely accepting of all walks of life, colors, sexualities, religions, genders, size and yes, disabilities as well.

With proper planning ahead, a visit to a Comic-Con can be a life-changing experience for someone who is chronically ill. I know they have been for me.

We want to hear your story. Become a Mighty contributor here.

37
37
1
TOPICS
JOIN THE CONVERSATION

The 5 Types of Friends You'll Likely Have as a Spoonie

89
89
0

Relationships are often times tricky to navigate. Whether it be family, friends, or lovers it is rarely a straightforward situation. Throw a complication like a chronic illness into the mix and things tend to be… less complicated?!

I know, it sounds odd, but hear me out. Everyone wears a variety of masks in their life. Some are for different occasions, others are for different people, but often times they maintain these masks for years. When you have limited energy resources and are forced into incredibly vulnerable situations like chemo treatments, ER visits in the middle of the night, and medication side effects, those masks that others in society tend to put on don’t last very long.

Personally speaking, I will wear a “mask” for work functions, a night out, etc., but they are incredibly short lived. If any friendship or relationship is around long enough, they get at least a glimpse of the “real me.” The beautifully, messy version of life. I didn’t use to view this aspect of my life as beautifully messy, but the longer I learn to manage my asthma, lupus, chronic pain, and other health issues, the less I am concerned with the capacity of others to deal with it as well.

Everyone has a different capacity of compassion, patience, and staying power. Most relationships are meant for a particular season in our life. Very few are meant to last forever. And that is OK. What makes this less complicated is that the personal dealings of having a chronic illness weeds people into more specific relationship categories a lot more quickly than if we were to have the energy to deal with everyone’s “masks” and illusionary motives.

Some people can cross over categories, some people grow into others and others eventually fade away.

Again, it is all OK. In order to help myself maintain a healthy mental state over all of the noise, I am learning to accept that it is what it is. So, let’s break it down:

1. The Waffler

This person usually means well, but their stay-power isn’t their strong-suit. Their compassion levels are usually high, and they, in some capacity, want to think they will stick around to help. But when push comes to shove, unless it is actually convenient for them, don’t put too much stock in what they say. They may say yes to everything. If they surprise you in a positive way by showing up, great! Just don’t be disappointed when they don’t.

2. The Optimist

This person is a lot like the waffler, but deep down they really want to do the right thing. Just like above though, don’t be too disappointed if they aren’t available. These people tend to spread themselves too thin because they are good people, but terrible at managing their own time and energy.

3. The Over and Above

These people are the rarest and when it comes to relationships. These people you don’t even have to ask for help, they just do. They show up just to help you do your dishes or drop off food when you are sick. Even when you aren’t having a bad day they still want to be part of your life. The bad thing about them is they will often not tell you when they are in need or let people help them either. A lot of chronically ill people can be like this on good days because they are trying to pay people back for when they are in need and there is a weighted guilt that comes with that.

4. The Fearful

These types relationships tend to only be around when you are having a good day because honestly, the whole “sick” thing freaks them out. These people might even come pick you up from the hospital, but they won’t go inside because of some past experience, or a personal phobia of all things “sick.” Don’t expect these people to be around much, especially as a chronically ill person.

5. The Savior

These people are only around when you are sick. They will take you to the hospital and come help when you ask because you physically are unable to do something. But when you are having a good day, they are just not around. This is because deep down they have some need to fulfill for themselves. They are able to pat themselves on the back that they helped you when you really needed them. They will tell you things like, “I’m sorry I couldn’t make it today, but if it was an emergency, then you know I would have been there.” This relationship is selfish so be careful. These people care more about the pat on the back they can give themselves vs the relationship with you.

It is incredibly challenging to find relationships within our families, friends, and lovers that are balanced. Everyone (chronically ill or not) has good days and bad days. While every relationship is healthier with stronger levels of balanced people in them, as a chronically ill person, it is more necessary than most. We just do not have the energy to deal with those who are not willing to invest. Having something so life-affecting and yes, often burdensome, requires a different level of vetting in the people we choose to spend our time with. Some people realize the value of four quarters over 100 pennies with age, but we realize it through circumstances.

The goal in all of this is to find a healthy balance. Seeking relationships with people who have high levels of compassion, patience and staying power needs to be every spoonies goal. Letting go of those without those qualities is hard. We want to see the good in everyone because a lot of time we desperately want others to see past what we think are terrible flaws, which sometimes includes how we feel about our diagnosis. We all need to realize it isn’t about people loving us in spite of our diagnosis, but rather in the midst of them.

We are beautifully messy.

Follow this journey on The Better Half of Me.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: maroznc

89
89
0
TOPICS
, Listicle
JOIN THE CONVERSATION

4 Ways I've Grown Because of Arthritis and Lupus

24
24
0

I didn’t have the same early 20s experience that most had, and actually, I’m OK with that. I am turning 24 in November and ready to take on the world full-force. For this, I interestingly enough have my chronic illness to thank.

Although I was diagnosed with systemic lupus just last year, I struggled with the vague diagnosis of juvenile idiopathic arthritis from the time I was in third grade. From all those years, I learned how to manage pain as a child and continue my passion for sports. It wasn’t until recent years that my symptoms became overbearing and unmanageable, along with the health of my knee dwindling after my surgery and infection mishap, which most likely happened from lupus. This ultimately resulted in a total knee replacement just two months ago today.

As I transferred colleges between my sophomore and junior years, which was drastic going from a small rural school of 2,500 students to an urban school with 40,000 students, I knew I had to quickly become an “adult” if I wanted to make it on a large and unfamiliar campus. Building new relationships, being proactive in all aspects of life, and time management were huge learning experiences for me as a young 20-something. I was determined to reach my goals, and then suddenly I was beset by lupus and end-stage osteoarthritis.

Experiencing these circumstances first hand is extremely unique, however I would not wish it on anyone. I do like to look at every experience, good or bad, optimistically though. So I am taking these unique experiences as an opportunity to grow from, whether it’s for better or for worse:

1. I learned time management. I quickly realized that my time was limited, and that I never knew when another flare would come. I prioritized every aspect of my life so that I knew everything would get done before my body turned on me again and left me couch-ridden. I am carrying this discipline through into adulthood to be successful in life, school and my career even as my health improves.

2. I learned how to cut myself a break. In college, especially after I transferred, I never gave myself some time to unwind. Overloading on credits every single semester so I would graduate on time, while balancing a social life and an internship, I was going on high speed from the moment I got up to the moment I went to bed. No breaks. This is unhealthy for anyone. After my diagnosis, I knew that my stress levels were high and dedicated myself to taking some “me time” where I just learned to live in the moment. Now, a year later, I am a much less freaked-out person which makes for a more productive adult.

3. I learned how to take care of myself. Many college kids have the perk of eating whatever they want, drinking every night, staying out until 4 a.m. and rolling out of bed to class the next day without a second thought in my mind. Lupus prevented me from going down that path. If I stayed up late and did everything that everyone else did, I would have failed out of college because my body would have kept attacking itself.

I was constantly researching proper diets, proper exercise, and proper mindset strategies to keep myself in check and healthy and to rid my body of excessive inflammation. This was a must for me to function, and if I stayed up late or ate unhealthy foods, I saw the difference in the mirror. I look back to pictures my freshman year of college, and I looked unhealthy without even realizing it at the time. I was over-stressed, over-tired, and my body was fighting itself from the inside out. Now since I have a name to put to my condition, I make the time to sleep, prepare whole and nutritious meals, and I have an excuse sometimes to not go out. I look like a totally different person, and I am so proud of myself for coming to this realization.

4. I realized the true importance of faith. Faith has always been an important aspect of life within my family as a grew up, but it isn’t until you experience trauma in your life that you truly see the hand of God working. I’ve been close to death before, I have been unable to physically sit up from pain, I constantly have to have the worry that lupus will attack my vital organs. However, I overcame each of these things with flying colors.

I know my path is being guided. I do not worry or stress much about the future anymore, because in every instance of uncertainty, I physically saw how God brought my life to a new beginning. At my six week mark after my total knee replacement, I was told I defied the odds of any patient, especially comparing my condition in the past. That’s faith and willpower in the works. I was worried about being well enough to finish school and start my career after my diagnosis, but I did it.

I came across the New York University masters of public health program online at a whim (and with short notice), had a literal epiphany that this is where I wanted to direct my career path, and then got in with a scholarship when I doubted I would even get in. I found my purpose in life for my career from my traumatic experiences, and hope to improve the entire face of healthcare and treatment options to make other patient’s experiences better. If that isn’t God working in my life, then I don’t know what it is. My mindset and outlook is totally at ease with the present. These experiences with chronic illness have allowed me to be successful, and now I am more determined that ever to make an impact in the world.

Although many would say that having lupus and arthritis “sucks” or that I “must be worried about my future,” I just smirk knowing that my future has changed for the better because of lupus and arthritis. I’m proud that I was able to absorb these learning experiences and turn them into good, but I know that without these events, I would not be the person I am today. I had to “grow up” earlier than most in many aspects some people don’t realize, and although I had more worries than most who are in their early 20s, I know it was all given to me for a reason. Here’s to life’s challenges, whether short or long-term, and what we make of them. We all have potential for greatness!

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By:  DENIS KIPKAEV

24
24
0
TOPICS
, Listicle
JOIN THE CONVERSATION

Why Mornings Can Be Tough for Those With Chronic Illness

450
450
1

I wake up, staring at the coffee maker, counting the seconds, watching the never-ending drops. I pull out my pills. 10 to be exact for today since my doctor has put me back on a steroid regimen. I double, triple check to make sure I don’t take too much or too little (triggering my OCD that has developed since my chronic pain). I get my coffee, take my pills, grab my ottoman to put my feet up, my heating pad for whatever is ailing me today and I wait patiently till the pain finally subsides.

 

Stepping back to before lupus developed and took over, mornings were my favorite. It was always “my” time. I always enjoyed waking with an ultra-sweet coffee and my alone time to scroll through social media and take in the morning sun. Lately, I have been having a harder time enjoying it though. From waking up stiff and a little creaky to having to amp up myself to actually sit up and go to the bathroom. I now just lay in bed staring at the ceiling, telling myself the pain will eventually go away.

I have eventually acquired more pillows, an actual pillow top for my bed and have tried muscle relaxers to loosen my body for a better sleep, but it never seems to help. Hopefully one day, those of us with chronic pain will get some relief. But for now, we just sit and wait for that coffee to brew, and take our pills.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Halfpoint.

450
450
1
TOPICS
JOIN THE CONVERSATION

Why I 'Put Myself Back in the Picture' After Years of Hiding My Body Due to Illness

537
537
6

This is me receiving my first Benlysta treatment. This is something I would normally never share – too vulnerable, too revealing, too real, but this is my reality and I’m taking a risk and sharing it here with you.

woman receiving infusion of benlysta for lupus

Seven years ago my life changed forever when my rheumatologist uttered the words, “It’s officially lupus.” Now, a little backstory – lupus is incredibly difficult to diagnose and I went through about 15 years of this nebulous “it’s something autoimmune,” “it’s lupus-like,” “let’s just blame the fibromyalgia” before I received the definitive diagnosis.

I made a decision to keep as much off social media as possible in the beginning as I figured out the best way to balance maintaining my privacy with letting people in on my new “truths.” As I slowly began to let people in on my “life with lupus” (I wrote a post about it if you’re interested – total self promotion here!) one of the things I had to reconcile was the major change in my appearance.

Due to the joy of prednisone (a.k.a. the Devil’s Tic Tacs), I’ve been carrying some extra weight on my already, um, fluffy, frame. (I was never thin, by any stretch of the imagination, but I certainly wasn’t as “inflatable” as I’ve become thanks to all of the meds). In addition to the extra weight, there’s the moon face, bloated stomach (getting tired of people asking when the baby’s due), water buffalo hump and more.

Then there’s the hair loss – anything from thinning on top to handfuls at a time. There are days I look in the mirror and don’t recognize the person staring back at me – another casualty to the war against lupus. In the beginning, I didn’t want to be in any pictures and hid any time a camera came out. Too fat, too swollen, too ugly.

At my “worst” (I had gained a lot of weight and lost most of the hair on top of my head) we were taking family pictures – four generations. I’ve always been the heaviest of my siblings, but this time I look like I don’t even belong with this group of people, something that upset me tremendously. The worst part is that this is the final set of family pictures we have with my beloved grandparents before they passed away.

I swore that “when I looked like myself again” I’d start getting in the pictures again. I especially didn’t want anyone on social media seeing me looking “so gross” and I certainly wasn’t deliberately posting pictures of me looking “sick.” Then I read a life-changing article by someone who was worried about being “too fat to be in the pictures” and it rang so true. The author spoke about how she avoided the pictures until she almost died and realized she wouldn’t be in the pictures anymore.

It got me thinking. Living with lupus and the amount of near-misses I’d had meant nothing was promised. If the unthinkable happened (sadly, when you have chronic illnesses, you do think about it – too much, but that’s another post) I’d be leaving my kids without pictures of Mommy. My kids don’t care how Mommy looks, they just want me there and in the picture. That was the day I “put myself back in the picture” and realized it was OK.

I know when I go to 20 mg. of prednisone, my face swells up and I gain what I’ve nicknamed my “pelican gullet” swollen double chin. I mostly wear LuLaRoe since, in addition to being the softest, most comfortable clothing (that helps my super sensitive skin), shows off my skinny legs while disguising the six-months-pregnant-looking stomach. (Incidentally, if there are any LLR reps who would like to sponsor a lupie, I’m taking offers!) My hairdresser is amazing at covering the thinning bald spots and as it starts falling out again, we recently dyed it a vibrant red (I figure, like leaves, let it turn a nice color before it falls out).

I’m no longer waiting for my appearance to “go back to normal” since I’ve realized that day is not coming (at least not anytime soon) and I’m not willing to put my life on hold waiting for that day. My kids deserve to have pictures of their mother and don’t care how I look. My husband deserves to have family pictures on his desk and still looks at me as the same “beautiful bride” he met 20 years ago. (I’ve encouraged him to get his eyes checked but they say love is blind).

family standing together on a mountain

I deserve to be in the pictures because they are my “truth.” Which brings us to this picture. I’ve always shied away from hospital bed pics (heck, I don’t usually even tell people when I’m in that place) and when I went through six months of Cytoxan infusions, I never took any pictures let alone thought of posting them.

Fast forward and here I am on display, bloated, pelican gullet chin on display, hooked up to this new IV medication that I’m “cautiously optimistic” will help tame the lupus beast (remember, there is no cure), putting it all out there in an effort to promote awareness and understanding. It’s not for attention (seriously, would you put yourself out there looking less than your best? It’s supposed to be #IWokeUpLikeThis not #BodyByPrednisone) yet that is always the fear when you open yourself up in this way.

So, to those of you reading who are healthy, please don’t censor yourself from the pictures, even if it’s a “bad hair day.” Remember, your loved ones don’t care and just want you in the picture (and chances are, you’re the only one noticing your less than stellar hair). And to all of you reading who are ill, we deserve to be in the pictures as well, not just on the days when we “look good.” We’re warriors fighting immeasurable battles and deserve to have that chronicled. Because war isn’t always pretty.

We want to hear your story. Become a Mighty contributor here.

537
537
6
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.