“Why Can’t You Work?” – Invisible Illness From the Inside

I’ve been mulling over how to address this very directly for a few weeks now.  As I am watching friends go through the same questions that I have faced in the past, I think it’s time to spell some things out.  If you have a friend or relative that has an autoimmune disease like Lupus, Rheumatoid Arthritis, Multiple Sclerosis, or other invisible illness like Chronic Fatigue Syndrome, Lyme Disease in chronic stage, or neurological conditions like Fibromyalgia and Dysautonomia… I don’t say something like this often but I am BEGGING YOU to take the time to read this blog entry.  If you truly care about that person, take a few minutes out of this one day and inform yourself about what their day will be like today.  PLEASE.

I want to encapsulate as much pertinent information as I can here.  It does however require some insights that may be foreign to the average healthy individual.  I cannot ask you to put yourselves in our shoes, because you’ve never been in them.  You can only use your imagination and then from there take our word for it about the things that you have not fully experienced.  I will also add that I genuinely hope that everyone reading this that has not experienced one of these conditions NEVER DOES, and I mean that.  I literally would not wish my life on my worst enemy (and I have some people out there that I can actually say that I hate.. as strong of a word as that is.)

I have written before what my day is like from the time I wake up and the tedium that goes into each move and decision.  I won’t detail it the same way again, because it’s already been done.  I will shorten it here by saying that as a Lupus and Fibromyalgia patient, with autonomic dysfunction and other comorbid conditions, every single finite detail has to be approached for what it is singularly, when a healthy individual can execute several in one smooth motion.  I don’t open my eyes immediately.  I don’t sit up suddenly.  I don’t hop out of bed and walk anywhere without first sitting up for a minute to see how I feel, then stopping again once I am on my feet for the same reason – before taking one step.  Imagine your whole day having to be analyzed that way whenever there is a change in activity, venue, or position.  If I have been in the chair at my desk for more than a few minutes, when I stand up I have to be careful.  My blood pressure drops 20 to 30 points (medically documented) and people with that condition are at risk for passing out.  It’s called Orthostatic Hypotension, and happens with something called Postural Orthostatic Tachycardia Syndrome (POTS) which is a Dysautonomia condition.  This is Dysautonomia Awareness Month, by the way.  You might want to take the time to look that up and learn a little.  It is neurological, and incurable – just like the other diseases I’ve mentioned.  They can all only be treated and managed, and most of them are progressive.  At the very least, some of them cause progressive symptomatic manifestation, even if they don’t cause direct damage to the patient’s body.  The stress caused by lack of sleep, lack of REM sleep, difficulty absorbing nutrients, adrenal exhaustion, cardiac strain, dehydration, constant firing in the central nervous system, and more than I could possibly name here has a deleterious effect on you.  It’s debilitating, even when the disease itself is not considered progressive and debilitating (as with Fibromyalgia).  The human body can only endure so much strain over time.  Things begin to break down.  Other diseases and damage creep in. In the case of something like Lupus, internal organs take damage during flares because the immune system is attacking healthy tissues in every possible system in the body.  You cannot predict where it will attack either.  Sometimes it takes time to find the problem and try to get it under control.  This is why some Lupus patients end up needing chemotherapy as a treatment.  Their immune system is so over-active and out of control that it has to be severely suppressed.  That’s to keep us from… you know… dying.  People die from the complications of Lupus every day.  It’s that blunt.

Now that I’ve explained the basics of the diseases… here is why it is disabling enough to stop a lot of us from holding employment.  Let me first say that I applaud anyone that is able to work, and I hope you continue for a long time.  Your strength is admirable and I’m happy that you have your conditions managed well enough to allow it.  For our healthy friends, we’ll address what happens with those of us that can’t, when we can’t.  One preface: This is variable for some people.  Sometimes a patient is able to go back to work and continue for a while, and then they crash again.  Sometimes it’s temporary and sometimes it’s not.  Autoimmune patients tend to be overachievers, people that started working young and were driven to continue for many years without a break.  People that started college young.  Women that excelled in fields that are primarily male-dominated.  Many were athletes.  We tend to go until we drop.  When that happens, it’s a hard crash.  We tend to ignore pain and fatigue because it’s just in our nature to do so.. but when you ignore your body’s signals, it can cause a lot of damage.  Most especially in the case of a disease that is as destructive as Systemic Lupus and it’s friends.  To be clear, there is no way to mediate how this disease will eventually manifest to any sufficient degree.  It absolutely IS progressive, even when caught early and treated early.  The only thing you can do with a medication like Plaquenil (what I take) is slow it down, and how much you slow it down depends on the individual – things out of our control entirely, like genetics, environmental exposures, the weather, and the randomness of the disease itself.  We only have control over a few things and I encourage other patients every single day to do what they are able, from eating right to exercise and reducing stress where they can.  That’s important for regaining and maintaining quality of life.  It is not however a stop sign for Lupus.  We’re all on a timer that we have some input for but no real control over.  It’s also… just that blunt.  Those of us that have the disease are fully aware of it even when we don’t discuss it openly.  We are trying to enjoy the years we have with as best quality as we can get without dwelling on the future decline we may face.

To interject before anyone thinks it, this is not the same as the normal decline of age in a healthy individual.  We face all of the things that you will but sometimes 20 to 30 years earlier than we should, and more of them together than the average healthy individual.  It’s a storm and it arrives too soon.  Please don’t try to compare it to your normal aging experience.  If you already had your healthy youth, then you don’t know what it’s like to miss out on that.

Just as a side thought… When our acquaintances keep asking intrusive questions about WHY can’t you do this, or WHY can’t you do that, it makes us have to stop and think about the negatives a bit too much.  I don’t mind people asking questions about my illness and I am an open book.  My entire world however is about awareness and advocacy.  This IS my job, along with taking care of me so that I can stay functional enough to create the awareness videos and other projects.  I have committed to that alone because I am able to do that.  I do it for everyone that cannot.  Some people can’t do what I do, and all they can do is try to manage their symptoms and the progression of their illness in silence.  Don’t push them too hard.  They may be more fragile than you realize.  Words hurt.  Disbelief HURTS.  Badgering in areas where you do not understand the reasons and circumstances is not helpful to anyone and it seriously just makes you look like an ass.  I can’t say it any other way.  If that sounds offensive, consider it a dish back out for the offenses dished out onto us.  Even if you are someone that believes in “tough love” (and I personally do, for the record), it’s not your place to chastise someone that is already fighting to survive and to keep their head above water.  Unless you have actually taken the time to be an intimate part of their support system, and you have earned to be entrusted with the details of what their day is like, you honestly have no idea what you are talking about.  I hate to be so exclusive, but I am being frank for a reason.  I have seen too many friends being harassed and hurt by people that think they mean well.

I am not able to hold a job.  If I dressed myself up and went for an interview right now, I could make myself appear qualified (other than a really out of date resume’) and lie to an employer about being reliable.  I would have to lie, because I am not reliable.  The question has got to be in a lot of people’s minds as to why I can hike, camp, and do other outdoor sports, and have this big project for Half Dome planned, but I can’t hold a job.  This is why I started the video series this year on my YouTube channel called “The Price We Pay”.  I can do it, on my own schedule, in the timing that my body allows, and then I pay for it later.  Up until this year, I wasn’t sharing the aftermath.  I was only showing the accomplishments to encourage others.  I realized they were missing something vital about my process and not getting the full picture, and I realized that had to change.  An employer isn’t going to accept you calling up one morning and saying that you can’t be in today, maybe not tomorrow or the next few days, but you’re not really sure… and it could be a few weeks or months, can’t say.  That is the reality of Autoimmune Diseases in particular, and several neurological conditions as well.  I happen to have some of each – that’s a common problem.  We all see wealthy celebrities “forging ahead” and continuing to work as well, and they are probably spending a ton of money on the very best treatments so they can stay on their feet longer, but I guarantee you they are crashing later too.  You just don’t SEE it happen.  I am willing to show the world my pain afterwards, but not everyone has the emotional strength to be that honest either.  Understand that on my own schedule, I can cancel a plan or activity without notice.  It affects no one but me.  I can decide that even though last night I thought I was going to get up early and hike, today I just can’t.  I do that on a regular basis.  Not everyone knows about that part;  it’s not important to announce.  I can also guarantee you that anyone else that you know with one of these diseases is doing the exact same thing.  Again… an employer cannot accommodate that.  They will not.  There are a few cases where someone manages to get a work-at-home situation but it’s not terribly common.  It usually requires some specialized experience or skill too, or having had the job in a location for a time first.  Some people are also not equipped to meet the deadlines those type of jobs require.  They may be too dysfunctional even at home to be reliable there.

There is a well-known set of statements that all of us in the rheumatic autoimmune community have seen and heard repetitively.

One of them goes like this: My friend so-and-so has that and they work full time. 

Another: My aunt had that and she took aspirin and got on with her life. She was just fine.

Also: I have back pain too but I have to get things done and I power through it.

Stop telling us that life is hard.  We are fully aware of that, and in fact we empathize with whatever aches and pains anyone on the planet has had to endure – probably more than you are capable of understanding, in reality.  Some of us (not me) started off with normal, healthy lives, and had many years of activity and athleticism, and great memories that are now haunting us.  Personally, I was born not quite right.  I’ve had chronic pain since childhood and I have no idea what it’s like to have a totally pain-free day.  Chew on that concept for a few minutes.  You still want to be me?  Do you still want all of my “spare time” to enjoy what I endure?  I doubt it.  I have moments where I am having fun like anyone else.  You really do not want what goes with the copious “spare time” though.  Trust me.

If you have never read The Spoon Theory, please look it up.  It’s a great analogy that explains how our energy is limited for everything we have to get done in a day, even ordinary things that everyone does.  It’s written by Christine Miserandino and a copy can be found on the Lupus Foundation of America’s website. 

I wish there were a way to adequately describe to a healthy person, or someone with the usual and common health conditions that happen to many and come with age… the depth of what it is like to have an immune system that is literally trying to KILL YOU.  If you’ve seen someone say that and dismissed it, you need to understand that it is not being stated merely as an expression.. like when someone says “My feet are killing me.”  No.  I mean KILL YOU.  Dead.  Your immune system is supposed to protect you.  It’s a ready and armed military unit, and when it goes haywire like ours has, it will look for anything to attack.  Your eyesight.  Your heart (like me).  Your kidneys.  Your muscles (me).  Your connective tissues (most of us).  Your central nervous system (I have that too).  Your skin.  Your reproductive organs. Your teeth and gums. Your bones.  Your hair.  Everything is subject to attack.  I’ve lost about 40% of the hair I used to have, maybe more.  That’s “just” an emotional impact but I still feel it.  That started before I was even 30 yrs old.  Sometimes, some days, there is so much pain and fatigue that you can’t tell where it is all coming from.  It’s just everywhere.  Others maybe it’s one or two joints, but something still hurts.  When you have neurological involvement, along with the random stabs that feel like someone is sticking you with an ice pick, you’re simply so depleted that your muscles won’t respond as needed.  I can go from one day working with weights at the gym to the next day unable to crack the seal on a new water bottle.  There is no way to predict these changes.  How does one plan a life around that?  We can’t make firm plans for anything.  Don’t anyone dare try to tell me that life is random, and no one is assured of things going perfectly one day to the next.  I am totally aware of that too.  You however, as a healthy individual, can go to bed at night with relative certainty that when you wake up tomorrow your body will be as functional as it was when you went to lie down.  Most of the time, there won’t be any significant changes in the night.  For us… that is never, EVER true.  Every single day is faced as a new slate with unknown factors that could be good surprises, or a month-long horror show.

This is the one reason it is so important for an autoimmune patient to learn to embrace moments and love every second of the ones that work out right.  This is why some of us reach hard to do the occasional off the wall thing like a tandem skydive, or a trip that is offered to us, or any experience that we’ve long dreamt about.  It’s almost a requirement for us to have a bucket list because it gives us reasons to keep breathing at times.  Not every disability is visible.  Having a disability also does not require us to hole up in the house, look miserable, and cut off all social contacts like we aren’t fit for humanity.  Yet… we always, always have people looking sideways at us if we even dare to crack a smile or laugh at a joke.  God forbid one of us goes out for an ice cream cone, or sees a movie, because we are expected to not have a life at all.  We are not allowed to enjoy anything and talk about it because the second that we do, someone is there asking well if you can do that, why can’t you do THIS?  If I am on my own time, and I am in control of saying when I have to stop, possibly go home, probably lie down, then you can darn well shut your mouth about what I do with my “spare time”.  Having gone through the agony that I did in 2006 when I couldn’t even stand up under my own power, if I find enjoyment in something I am going to do it!  Your approval is neither required nor desired.

If a cancer patient had wishes, people would stand up and cheer them on.  They would say how sweet it was of people to provide them opportunities, and how brave they are for still participating in life.  Autoimmune and neuro patients though?  If we take one step out the door for anything other than a Dr appointment, suddenly there must be “nothing wrong with us”, and we can’t possibly be that sick.  ARE YOU SERIOUS WITH THAT?  Get out of here.  If that’s how you think of me or any of my friends then get off my blog, get off my social media, unfriend me, and don’t ever talk to me again!  I am done.  If anyone wants me to choose, here it is.  Those that have been there for me through the worst, and cheered me on both through that and the best… those that have proven they are trustworthy, honorable, sincere, and genuinely loving friends are deeply appreciated.  You will go with me all the way to Half Dome, and more.  I love you for that.  Anyone that thinks any of us are faking it, milking it, or making more of it than it is, BYE.  Either get educated and get with the program or GTFO.  NO MORE ABUSE.

Be a grown-up.  Realize that you don’t know everything about someone else’s life.  Try asking and listening instead of talking and assuming.  It develops character.




About Tala

-Livestream Broadcaster - Active in Periscope & Busker -YouTube, Twitter, Instagram, & Facebook Pages www.talanoexcuses.live Advocacy for better quality of life with catastrophic illness & injury. Conditions I live with myself are my awareness platform: rheumatic autoimmune & neurological, women's heart disease Traditional First Nations (Native American) -Training: Tai Ch'i Chuan, medical terminology, cultural Medicine -Avid about hiking, camping, & outdoor adventure Special Interests: Natural health, everything from East Indian to East Carolina cuisine, 16th Century German fencing Favorite Travel Spots: Yosemite, Catalina Island, E. North Carolina, Northern CA redwoods/coastal rainforest ~I live as naturally as I can, stay on a whole foods diet (as in what I eat, not as in "a diet"), avoid as many synthetic meds as I can, and do not consume artificial sweeteners and most preservatives. If you're curious about why, see my posts.~ Periscope/Twitter ID: Tala_NoExcuses https://badges.wegohealth.com/ha-awards-2016.js?referrer=Owb2x2Nb8L81mhJHyfwGcg

Posted on October 10, 2015, in General Blather, I Am That Wolf, Things That Make You Go... AAAaaaauuuggghhh!!!, Thriving With Lupus and tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink. 24 Comments.

  1. Reblogged this on JuJu's LUPUS and commented:
    Especially relevant blog from Tala during this time that Lupus is the talk of the town- with Selena Gomez coming out with her lupus & chemotherapy for the disease.

    There isn’t a one of us with autoimmune disease that hasn’t struggled with some of these issues. Tala nails em with eloquence & fortitude. Don’t miss this one!

  2. Standing ovation, round of applause!

    Tala has perfectly described what it’s like with Lupus or any autoimmune illness. Our struggle can be a lonely one if our friends and family do not take the initiative to research and learn about our illnesses or even give us the time of day to attempt to explain things. If you don’t look sick, how can you be sick?

    Well……. I’m sick. And while a few very close friends are understanding and knowledgeable, the vast majority of my friends and family are not and they continue to deny that my condition is serious and are always trying to compare their lives or someone else’s lives to my own.

    My greatest allies are those in the autoimmune community who can honestly say to me “I understand” when I vent or gripe.

    Education and knowledge is the best way to combat the ignorance that is lobbed at autoimmune sufferers. There is so much awareness and information out there about many other diseases and hardly any when it comes to the vast majority of autoimmune diseases. And it’s past time that it needs to be addressed.

  3. Thank you so much for such a powerful and effective post. I have been sick for seven years, but just started telling people last year, due to most of the attitudes that you mention in your post. I am hoping to one day be as assertive as you are about my rights as someone with a chronic illness.

    Seriously, thanks so much for sharing.

    • You are most welcome. Thank you for taking the time not only to read but to comment as well. I completely understand the hesitancy to speak up for yourself. It becomes important to advocate for yourself when dealing with physicians, and it is a useful skill dealing with other people as well. It takes time. You’ll get there.

  4. I read your reflection to my husband. He was moved to tears, not just by your personalization of the story, but mostly because your words told my story as well. He has been by my side for over 35 years. He was there when I was a healthy, able-bodied wife, mother of three, teacher, coach, community leader, etc. zooming through life full speed ahead. He was there as my body began its rebellion complete with fevers, rashes, blisters in my mouth, inability to tolerate heat or cold, and the fatigue and pain that was so prolific I sometimes could not get out of my car and walk in the house. He was there as I went from doctor to doctor with no answers all the while I tried so valiantly to power through each week, each day, and then finally each hour. He was there each time I was in the hospital as the doctors took out my reproductive organs, my appendix, my thyroid, and when I was rushed to the ER fearing a heart-attack only to find out that it was pericarditis. Even then we had no answers. No one connected the dots. Looking back, they so clearly lead to a SLE diagnosis. Yet, those around me seemed to have all the answers and he heard them all…Like, you need to get some sun, you need to eat this or that, take this vitamin, do this cleanse, quit thinking about it, read this book, pray more, stop being so negative…and this list goes on. He’s heard the comments from those who knew someone who had it and they worked until the day they died (at 52!), and to bring this rant back to the theme of your reflection, he has been there as every part of the life I had has been slowly taken away from me. He has seen me cry myself to sleep because another school year has started and I want so badly to be in the classroom, but I can’t. My body is unreliable. My health is fragile at best and my emotional state isn’t far behind. He knows that the two comments that can take my breath away, steal any happiness I may have at that moment, and kick my feet out from under me are why can’t you work and you don’t look that sick. Those comments are usually followed up with, but I saw pictures of you on Facebook standing on a rock at the Grand Canyon…if you can do that, you can work. They have no inkling of the effort, planning, and afterburn of one of my bucket list events require. They don’t know that he helped me get dressed, drug and carried me up the trail, hoisted me on the rock, climbed down, took the picture (while praying that I didn’t pass out of fall) then hoisted me back down, drug and carried down the trail and then watched me suffer the consequences. All so I could have a moment of awe. The only people in my life that truly know my story are my husband and my children and they are quick to shut anyone down who spews hurtful comments. So, when I read your reflection to my husband he felt, for the first time someone understood. Thank you, Tala, for leading the road of advocacy for invisible illnesses. As you walk forward know that we are behind you.

    • Thank you Beth for writing what you have here in this reply, your words are what I needed to hear at just this moment. I still work because I am mild a lot of the time, but it has been impossible for years and I need to make some decisions. Reading your comment has brought some reality to my anxious mind. I hate change and really hate not being in control. This illness has wrestled the control over my life from me and won everytime I have tried to fight back, but it is there in black and white. ‘They worked until the day they died (at 52!)’ I really needed to hear it, thank you XXXXXX

    • Your post is like you’ve read my life story. I’m so grateful each day to have my husband by my side while I fight what the lupus is doing to my mind my body. I’m so glad you’ve got a wonderful person with you too, I couldn’t imagine living with my lupus alone. Thank God for good spouses that remain after the disease takes almost everything else.

  5. Thank you

  6. I’m so glad you put this in STRAIGHTS writing. I’m with you all the way. Threw out all my box stuff and am eating natural foods and a lot of organic produce and meats. I do not work unfortunately and am getting disability. I have chronic back issues even after having operations, also Fibro, sjogrens, psoriatic arthritis, osteoarthritis. Most days are painful but a few I can do things. I went on one cruise felt fine. I went on another cruise and couldn’t even get out of bed. Ice packs all day

    • I have a friend that ended up with a similar experience. Her second attempt to go with family on a cruise – a gift, so not on her dime – she flared and could barely do anything. Sadly it created a lot of contention with family, because some of them don’t seem to understand the nature of the illness. It’s a shame but it does happen. Some people simply cannot accept that there are diseases that have intermittent manifestations. A large portion of society seems to be programmed to believe that there is a clearly defined appearance for each malady. They definitely cannot understand that some of them don’t have any particular appearance. You would think that would be easy to understand, considering you can’t see a lot of things that go on inside the body… such as heart disease. I suspect with something like that people have been programmed to believe that if you have a heart condition, you must be older or if you have diabetes, you must be overweight. These things can happen without any outward evidence. Young, healthy, active people even drop unexpectedly from heart attacks sometimes. People seem to have a need to categorize things neatly. That is not possible with an autoimmune disease.

  7. Love love love it as a fibromyalgia sufferer I appreciate you beyond words and not just the words I can remember lol fibro fog humor… thank you for this…gentle hugs

    • Thank you for the positive feedback. I watched the stats jump again today – 171 visitors so far. That’s awesome, and it tells me this is still reaching more people. :-) Hopefully this means I will pick up some new blog subscribers and readers for my Facebook Pages as well. haha

  8. Wow! You nailed it ! Thank you! Only wish ssi would see this and listen ! Thanks again this is great! P.s I have bad hashimotos , fibromyalgia and Raynauds

    • If only… SSI… SSD… Medicare… our Drs… various nurses… insurance agents… LOL There are a whole lot of people that need to open their eyes and their ears better.

  9. Thank you! I needed this today of all days, as I am preparing to quit my at home job that I had prayed would be the answer to being able to continue working and bring in money. I really thought without the driving I could do so much better. Laying in bed working is still just too much and it saddens me because I truly want to bring in good money and be able to provide for myself. Disability frankly scares me because I don’t know how anyone lives on it. I am fortunate enough to have a great man that supports me, so I don’t have to rely on it alone.

    • That can be a challenging decision and transition. It’s good to hear that this landed in front of you when you needed it. :-)

      Re living on disability – some choose to find very limited part-time work for income under the limit cap allowed. That helps supplement the payments. Others just have to exist very meagerly. I hope that the changes for you go smoothly. It sounds like you need a well-deserved break.

  10. We’ll said ……. It’s time people started to understand what r life’s is like….. I myself have fibromyalgia and for the past 3 weeks I have been in extreme pain but people look at u as if u have 2 heads when you say about it , it makes me feel useless and depresses u even more than u already are xx

    • That is invisible illness for you. Most people expect to see something obvious on the outside, and when we look relatively “normal” they don’t know how to categorize us. Even with in our own community – everyone that has an illness of this nature – I find that you will still run into people that don’t have a concept of the severity of certain conditions. Some of that is ignorance and some of it is just something they never really thought about. One of my best friends developed sacroiliitis and gained a new appreciation for the pain that I have experienced with the sacroiliac joint injury. She actually came back to me and told me she had no idea what I had been going through. She was extremely sympathetic at that point, not that she had ever been unsympathetic. She just didn’t know that much about it. This was coming from someone that has experienced levels of pain with other conditions that I know nothing of. For us it is important to develop the personal confidence to be able to simply see the position of others as coming from a place miseducation, and a lack of information. As a patient, you are better informed, better equipped for compassion, and more experienced and knowledgeable in medical topics then the average citizen. Recognize your own skill. We have a natural ability to empathize with others in pain, and those that are readily dismissed. The only person that is useless is the one that would dismiss any of us and refuse to learn.

  11. This makes me SOOOOOO happy! It describes my daily battles to a tea.
    I especially appreciate how you pointed out that we aren’t allowed to have fun and the constant accusation of being lazy essentially “If you can do that…why cant you work?”
    (Which the answer is basically, your health varies so much from day to day that you’re unable/unreliable to work, and you crash for prolonged periods of time and you’re never able to predict it. Everyday is a battle.)

    I have been battling this for years, with next to no support. It has crushed my spirit and I felt so alone. I had no support from people, and no support medically, so I wasn’t even educated about why I was the way I was and I just kept pushing myself until I almost died on more than one occasion. For those who don’t know I have a Traumatic Brain Injury, and I’m being referred to a Lupus specialist (due to abnormal tissue damage and something off with my cell account) and the doctors suspect I have fibromyalgia, so this blog is very relevant to me.

  12. This is what I posted on my Facebook page. I hope some people in my life take time to listen.

    “ATTENTION YOU! Begging anyone who cares about me and my health conditions, or anyone who has a friend or relative that has an autoimmune disease like Lupus, Rheumatoid Arthritis, Multiple Sclerosis, or other invisible illness like Chronic Fatigue Syndrome, Lyme Disease in chronic stage, or neurological conditions like Fibromyalgia, to read this!!!!

    This blog makes me SOOOOOO happy! It describes my daily battles to a tea.
    I especially appreciate how it pointed out that we aren’t allowed to have fun and the constant accusation of being lazy essentially “If you can do that…why cant you work?” -Which the answer is basically that my health varies so much from day to day that I’m unable/unreliable and therefore unable to work. My health crash for prolonged periods of time and I’m never able to predict when or for how long I will crash or the severity of it. EVERY day is a battle.

    I have been battling this for years, with next to no support. It has crushed my spirit and I felt so alone. I had no support from people, and no support medically. I had it constantly put upon me that the fault was in me. That somehow I wasn’t trying hard enough, or disciplined enough. That I was stupid, and weak, both physically and emotionally, and I was called a outright liar and accused of being lazy when I claimed that I was in pain. Trying to navigate through my illness while carrying the weight of those words left me in the dark for a very long time because I was battling the manifestation of a problem instead of the problem itself. And because I believed those lies and accusations against my character (though in many ways I did lack character, mind you I was very young still) I tried to battle it alone, sometimes even telling myself that it was in my head, which lead me into denial myself. Because of that I wasn’t even educated about why I was the way I was, or why I was feeling the way I was feeling. It surely wasn’t laziness or lack of determination. I was pushing myself to the extent of making myself crash faster and burn longer. And because I didn’t understand this is chronic and it won’t just get better, (The generalized recovery rules don’t apply to people with chronic conditions, because you never fully recover, you just learn how to manage your illness) and because of my ignorance I just kept pushing myself until I fell so ill that I almost died on more than one occasion. (Whether it was my immune system was so low that a common cold put me in the hospital, or being so weak that I was unresponsive as the entire house filled with smoke because I was so sick I forgot that I was cooking, and countless other events.)

    For those who don’t know I have a Traumatic Brain Injury, and I’m being referred to a Lupus specialist (due to abnormal tissue damage and something off with my cell account) and the doctors suspect I have fibromyalgia. So this blog is very relevant to me. You know what’s sad? I’m JUST starting to receive some help and support in the past year. I’ve just started to receive disability. I’ve just started to have the opportunity to see the doctor (Though it’s a constant fight for me to even get to my appointments, or get anywhere for that matter) and it’s overwhelming. So I ask you, anyone who reads this. Take time to care about those in your life who are battling chronic illness, because we never get a break from it. It’s a daily battle, and its lonely, and its tough. Those of us who battle chronic illness feel like we’re forced to put on our happy faces all the time because there are very few who care enough to be there as a support.


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