What We Wish You Understood | Working With Chronic Illness

What We Wish You Understood | Working With Chronic Illness

Living with a chronic illness is hard and comes with many challenges. Including challenges most never thought they’d face, especially at such a young age. For instance, when I graduated from nursing school I never dreamed that I would only be able to work for ten years before I had to leave my job to care for myself. That being said when you think of chronic illness you wouldn’t automatically think of the fact that many who suffer from a chronic illness will have to leave the workforce long before they wanted or planned to. But it’s true, sadly, many end up having to leave their dream job or the career they loved to stay home and take care of themselves. Which in and of itself brings up challenges. The biggest being that most around us don’t understand us or our decisions to leave the workforce. Or what that looks like as far as what we can and cannot do now that we are no longer working.

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Focus On The Fight | Epilepsy

Focus On The Fight | Epilepsy

Welcome to Focus On The Fight, a series of interviews that will be posted weekly, focusing on a blogger/advocate, their health and their advocacy work.

This week we meet Christalle, and we will highlight: EPILEPSY

Before we dive into the heavy stuff, please tell us all a little about yourself outside of your health! About your family or your hobbies !!

Christalle Bodiford is an artist, writer, and adventure seeker. As an entrepreneur diagnosed with epilepsy, Christalle brings a unique perspective of empowerment that inspires others to embrace a positive mindset and live with purpose. When she's not writing or advocating, Christalle enjoys puppy snuggles with her scruffy terrier and outdoor adventures with her husband.

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Living With Chronic Pain | Life Update

Living With Chronic Pain | Life Update

The last two months have probably been some of the hardest months I’ve had since this crazy journey started. I've been in more pain and for longer than I ever thought possible. I have said too many times lately but I feel like if it has a name it has probably hurt at some point. Literally everything has hurt from the big things like my back and hips, to the smaller things like my hands and fingers. There has even been time when my HAIR and SKIN hurt.

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Social Media | How It Is Beneficial To The Chronically Ill

Social Media | How It Is Beneficial To The Chronically Ill

Social Media…..We always hear about the negatives viewpoints and aspects of each platform. Like the fact that social media is full of highlight reels rather than what’s actually real. We only get to see what those influencer types choose to show us, which is usually only the highlights. Or the fact that the internet is full of what we will call “keyboard warriors,” who spew all kinds of nasty hatred into the comment section of any social media platform. They say things that they would NEVER say to someone’s face all because they can hide behind their screens or keyboards without any real consequences. While those are well known facts about social media, what isn’t well known, or often spoken about, is the fact that social media is a HUGE blessing to those in the chronic illness community. I’ll wait while you pick your jaw up off the floor. Did I really just say that social media is a blessing????

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Focus On The Fight | Psoriatic Arthritis

Focus On The Fight | Psoriatic Arthritis

Welcome to Focus On The Fight, a series of interviews that will be posted weekly, focusing on a blogger/advocate, their health and their advocacy work.

This week we meet Vickie, and we will highlight: Psoriatic Arthritis (PA)

Before we dive into the heavy stuff, please tell us all a little about yourself outside of your health! About your family or your hobbies !!

I am married with two grown sons and a five year old grandson. My favorite hobbies are reading and fishing.

What Chronic Illness (en) have you been diagnosed with? Which one will you focus on today?

I have psoriasis and psoriatic arthritis

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Focus On The Fight | Hereditary Lymphedema

Focus On The Fight | Hereditary Lymphedema

Welcome to Focus On The Fight, a series of interviews that will be posted weekly, focusing on a blogger/advocate, their health and their advocacy work.

This week we meet Jordyn, and we will highlight: Hereditary Lymphedema aka Primary Lymphedema.


Before we dive into the heavy stuff, please tell us all a little about yourself outside of your health! About your family or your hobbies !!

I love to cuddle my service dog, read books, blog, crochet, share my story online, and talk to my friends. I also especially love to garden when it's summertime.

What Chronic Illness (es) have you been diagnosed with? Which one will you focus on today?

Hereditary Lymphedema Erythromelalgia Ehlers Danlos Syndrome Type 3 Chronic Fatigue Postural Syndrome Orthostatic Tachycardia Syndrome Polycystic Ovarian Syndrome Daily Migraines Asthma MTHFR mutation. Today I will be focusing on my Hereditary Lymphedema.

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Grieving Chronic Illness

Grieving Chronic Illness

Grief is an interesting emotion that can be felt for any number of reasons. To most people, grief is associated with the loss of a loved one, or the loss of a marriage or relationship. Most wouldn’t think that one would grieve what they’ve had to give up. Or the loss of a life once lived. But that’s exactly what I think of when I think of grief. I think about the fact that I am mourning the life I once lived and the goals I once had. The life I had before Chronic illness rocked my life. 

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The Truth | It’s Okay Not To Be Okay

The Truth | It’s Okay Not To Be Okay

It’s okay......it’s okay to struggle, it’s okay to be real, it’s okay that you don’t always have your shit together. Life’s messy, especially when you live with some kind of chronic illness. Life isn’t all roses and champagne. Instead it’s full of messy houses, and dirty dishes. It’s full of down days where you can’t get out of bed, and high pain days. Life is real and that’s OKAY. When we live in a world of highlight reels and instagram perfect pictures it’s easy to forget that we live messy lives.

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Focus On The Fight | Inflammatory Bowel Disease

Focus On The Fight | Inflammatory Bowel Disease

Welcome to Focus On The Fight, a series of interviews that will be posted weekly, focusing on a blogger/advocate, their health and their advocacy work.

This week we meet Collin Wong, and we will highlight: Inflammatory Bowel Disease, aka Crohn’s.

Before we jump into the full interview, Collin, please tell us a little about you outside of your health! Tell us about your hobbies or family!

I am a soon-to-be freshman at Case Western Reserve University, with a focus on pre-med. In fact, I hope to be a pediatric critical care physician one day! In my free time, I enjoy doing graphic design and playing the piano.



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Don’t Feel Sorry For Me

I feel so bad for you.  Thanks, but there is no need for that, it is what it is..... Sometimes life hands you things you just can’t change and you just have to deal with it. Being diagnosed with some form of a chronic illness is no different. I know it seems like living with Lupus and chronic pain sucks and many days it does, but it’s no different than living with anything else. It is a PART of me, but it is not ALL of me. Just like being married is part of you, or being a mother. Yes, it’s a little different, but it’s also the same.

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Look Behind The Smile….

We all have heard the saying, “A picture is worth a thousand words.” This is absolutely true.  I have learned that as someone with a chronic illness, to look deeper than the surface that is presented.  The smile that is flashed for Instagram or Facebook. If you look behind the smile and examine the eyes, wonder what is deeper and look you see a deeper story and not the facade presented to the world.  

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Confessions of the Chronically Ill

Co-Written by myself & contributor Amy Nora When you have a chronic illness like Lupus there are going to be some thing's that you hold true. Things that you don't share with most people, things that you know most people don't want to know, or simply wouldn't understand. Things that you feel people who aren't sick would never understand. So as we have come to an end of the 2018 Lupus Awareness Month, I want to share some confessions from the chronically ill. Remember they might not be true for all chronically ill. This is based of the experiences/issues we have and deal with.

1. I often feel guilty --- Some of you are probably wondering why we would feel guilty. Well, there are a MILLION different reasons. We may feel guilty that we can't contribute to our families like we want to. Or we might feel guilty because we feel like we are a burden to our family and friends. Or because of the constants needs or help for basic daily life we need to ask of others. There are a million reasons why we might feel guilty.

2. I feel like I'm alone --- Again you may be wondering how we could feel alone when we have friends and family all around us. Well, that's simple, we may have people around us but they don't know the struggles we face everyday. So it's not so much that we may feel alone physically, it's more mentally and emotionally. Because most family and friends don't know what it's like to live our lives, and they can never truly understand our world.  We try and protect them from what we go through, because as much as what we deal with, we also know that they feel a stress.  This can intensify a lonliness.  It creates a vicious cycle.

3. I often experience some level of anxiety and depression --- There are so many reasons we may feel this way. We could be anxious because we aren't feeling well and there's nothing we can do about. Or because there is something coming up that we aren't sure we have the energy or stamina for. On the other hand we could be depressed because we had to cancel ANOTHER date with a friend or our spouse. We might also be down because we feel terrible and have for awhile. That takes a toll on your mental health.  The very nature of having a chronic illness creates a constant mental battle that is medically known to alter brain chemistry.

4. I am almost always in pain --- Even though you know I have pain medicine and have taken it. I am generally always hurting somewhere. NO, it's not searing, burning level 10 pain. It's more like a constant nagging annoying pain. Like a level 3 Pain. But it's usually constant. And chances are I won't say a word, and will often say "I'm fine" when asked.  Just remember, your fine and my fine are not the same.  Sometime ask, “No, how are you really doing today?  I want to know.  What can I do that would help you?”  When in pain and tired, these words are a balm physically and mentally.

5. Every good day is truly a gift ---Sadly, we don't always have a LOT of GOOD days. So when I do I may need help remembering that this day is a gift and I should take full advantage of it.  Do not make me feel guilty for having a good day, do not take my joy for this good day.  I may have to pay for this good day for a week to come or a few days in bed or on the couch with pain, fatigue, or any combo of problems including infections.

6. I don't look sick --- Nine Times out of ten you wouldn't know by looking at us that we are sick. That our bodies are constantly at war with itself. We just look like average people on the outside, but inside we may be a disaster. Going out in public knowing that others can't see our illness can lead to feeling alone, or being anxious.

7. I am often afraid to work, make plans or have a life --- I know this one sounds silly. Why would anyone be afraid of those things? It's simply because we never know what our body is going to do. I may feel fine at 8am, but at 11am I may feel like I was hit by a bus. Our bodies change so quickly and often without reason. So we never know if we make a dinner plan for next Wednesday how we will feel.  Every plan is made with the caveat of, “If I feel okay,” and buying tickets for an event is a terrifying exercise in wasting money and letting friends down.

8. Not all doctors understand --- Sadly, this is the case a lot of the time. I don't know how many times I've seen a doctor who's not my own and they know nothing about Lupus or how it impacts a person's life, body & health.  The American Medical Association even acknowledges that auto-immune diseases are one of the most under taught areas in medical school because of their complexity.  More times then not, as the patient you are educating the provider when you are already ill.  At best, they believe you and do some additional research quickly to understand.  At the worst, they do not listen and make medical decisions that do not help you are your condition because they do not understand fully how Lupus impacts you.  Remember, Lupus effects each patient differently.This is just a few confessions of the chronically ill. I could probably write a book on things we feel but never share. We don't want pity so we often keep our issues to ourselves. We don't want to be judged or looked down upon because of our health.  What we do want is for people to understand.  Just this week, Toni Braxton tweeted a picture of herself, and people were quick to make a judgement that she had plastic surgery.  No, she is on steroids for her Lupus.  Know Lupus.  Know that we deal with our body attacking us on a daily basis, and that no two cases are the same.  Know that we keep our secrets to protect you, but know those come at a cost.  So today…. We let a few cats out of the bag.

With Love,

Amber & Amy