I ask myself this question far too frequently. Maybe it’s because when I first started having symptoms 10-15 years ago I was usually told it was all in my head. That was not all I was told…  I would have people tell me I was acting sick to get attention too!  Because.. That’s logical… Apparently people think that sick folk just want to lie around in bed all day. Does that really sound appealing to anyone?  After about 24 hour you start getting antsy and need to get out of the house before you feel like you might actually go stir crazy!  Trust me on this. But it wasn’t just the general population. It is also the doctors. Why do you think we need to have second or third opinions just to get a proper diagnosis?  Doctors just don’t believe it if they cannot see it. Unfortunately often times when I get a new symptom (even with the doctors knowledge of my genetic diseases) they doubt it. If it doesn’t sound like a big deal to them they shrug it off or attribute it to medications or stress and the like. More often than not these symptoms become much more than anyone originally thought.  I don’t think anyone really understands how insanely frustrating this is. To be second guessed at every appointment. Especially if you’re a woman, seeing a male doctor ( look for future blog post on this subject!).  Females are often highly regarded as emotionally unstable, illogical, overly dramatic, no pain tolerance, etc.  This constant treatment of doubt and questionability not only makes a spoonies life more exhausting and stressful than it already is but it can also hurt our chances of a timely diagnosis.

One unfortunate circumstance of having an invisible illness is that often times our symptoms can be.. well… invisible.  For instance having chronic pain.  We often talk about living with chronic pain and always keeping a smile on our faces.  This is only the beginning.  With always trying to put on a face we are often just programmed to shrug off symptoms when they first pop up and it can take some time to even realize “oh, this may be a new symptom”.  Of course then there are the moments when something new pops up and by the time you get to the doctor it magically goes away only to return the next day or a few days later.  Isn’t that frustrating?  Happens to all of us!  There’s a whole other layer of to the invisibility of our symptoms to which identifying what is a symptom and what is just “normal” is actually not that easy.

We all try to stay up to date on our chronic illnesses and what we need to keep an eye out for etc. but it’s usually only the “BIG” items we remember as often times the list of symptoms is so incredibly large and full of all sorts of unusual and not so unusual items.  Chronic illnesses can cause all sorts of crazy things that you didn’t even know where symptoms!  For instance difficulty sleeping.  Anyone can have difficulty sleeping for numerous reasons such as stress or.. it can be a symptoms of any number of chronic illnesses.  Life it stressful, so how do you know what’s causing it?   Then there are the random identification factors that you wouldn’t think could be a sign of your illness.  Ehlers Danlos Syndrome, for instance, can be identified (depending on the type you have) by having flexible joints (if you have the hyper mobility type like me), soft velvet like skin, and easy bruising.  Obviously there are lots of other symptoms tied to these but everyone is different and these aren’t exactly things that would make you think “Hmmm maybe I’m sick”.  So, for the most part, we often wait until something else pops up or maybe even a fourth or fifth symptom until the light goes off and things start being pieced together.  It could be the disease, it could be the treatment, it could just be stress and life.  Where am I going with this?  My point being, when you have a chronic illness you are so used to doing whatever you can to not make a big deal out of anything that you try to avoid symptoms actually being symptoms.  We all know this can be dangerous.  If you’re like me you also try to avoid them because you fear what it could mean.  I hate to admit it but I often ignore when my kidney pain and symptoms start getting worse because I fear it will mean another trip to the hospital… a place we all hate to go!  Obviously I know my limits and will go when I know it’s time.  More importantly, playing this back and forth game with yourself and with others can really start to blur the line for your sanity.  It’s very exhausting, confusing and can be difficult to keep up with.  Especially if you are like myself and have multiple diseases with various symptoms, medications, dietary restrictions and more.  It’s tough to keep up with all of it all the time!

Then there’s another side that plays into our medical sanity where there’s this notion in the back of our heads that we will get to the hospital or doctors office, they will do a scan/tests, and see nothing, think we are drug seeking and send us home, again filling our heads with doubt and the feeling that it’s all in our heads.  99.99999% of the time it is not all in our heads.  Typically it’s just the tip of the iceberg to something unbeknownst to us.  So let’s talk about that shall we?  The most frustrating part of chronic illness is dealing with these last minute hospitalizations.  Why?  Because we get to deal with doctors that do not know anything about our disease, how to treat it, what to look for, and in the end send us home, accomplishing nothing, and as I said before… making us feel like we are crazy people.  These experiences and medical professionals continually have the ability to make us feel like the beginning of our illness.  The time when we didn’t know what we had and were praying for answers and for someone to realize that our disease is tangible and that we were not insignificant.  For those that have not experienced this let me give you an example and sense of what it is like every time I go to an ER with what I like to call “Kidney Colic”.

I arrive at the emergency room often in a large amount of pain.  If my pain level is not a 7 or up and I cannot get it down, I will not go and I will try my best to manage at home.  Now I call it kidney colic because it is a mixture of kidney pain that has become worse than normal, often involves severe nausea and a general feeling of crappiness (yes, I made this a word).  After waiting in the emergency room for what seems like an eternity I get called back.  PSYCH!  It’s just the billing department making sure insurance and other documentation are in order and they send you back to the waiting room.  That’s just cruel isn’t it?!   Another hour later they finally have a room available where I can lie down and have 3 nurses come in and ask me the same questions over again to prepare the doctor who then comes in and asks the same questions.  Process issue here?  Yes, I think so.  It’s like they don’t realize how hard it is to walk through how you feel and your history multiple times while in pain and on the verge of throwing up.  Then of course each one has to comment on “what a trooper you are for going through all of this, how do you spell the genetic condition again?”…”E-H-L-E-R-S DAN-LOS, I’ll have to look this up!”.  What happens next can vary.  Some hospitals will get you treatment right away and then get you in for scans, others make you wait for scans before giving you treatment.  Unless you specifically ask for it before.  I make it a habit to ask for treatment as soon as I get back there and I ask each nurse and doctor when they come in for their questions in hopes that by the time #4 comes in they will have the medications readily available.  I have my CT or Xray and then I wait for the results.  Will they see something or will they see nothing?   What if they see nothing?  What will I do?  When will my doctor be able to arrive and get rid of these idiots?

Here is what almost always happens until my specific kidney specialist comes in to school everyone on my disease.  The baby doctor (as I like to call them, because they are clueless) comes in to tell me that “your scan looks ok, there are no obstructions so I am not sure what is causing your pain”.  Note here that all of the previous history I made them aware of seems to go completely out the window.  I then proceed to explain to him again (because I told him earlier) that my kidney disease causes chronic pain, renal colic, nausea etc.  I treat it daily and it is managed well for the most part but I have extremely bad days where treatment is not enough, are you sure you didn’t see stones?  The response is always “Well.. not passing but you have stones sitting in your kidneys and those don’t cause pain”.  “Oh really? you think stones moving in the kidney doesn’t cause pain? or small cysts in the kidney or dilated tubes and kidneys filled with fluid?” interesting.  This is often the time my doctor will come in and look at the scans himself.  Then everything changes. He comes in and most of the time has to point out that I do in fact have a stone(s) passing that need to be flushed out and could have avoided all the nonsense of the ER.  The only thing that may change in this scenario is having an ER doctor who does see the stone(s) passing, but if you think the scenario changes much with him seeing the stone, you would be mistaken.

When I say this happens every time, I mean EVERY TIME.  Sometimes I get so frustrated with the incompetence and un willingness of the doctors to hear me out, other times I am just too sick to bother with it, and start to question myself as well.  “Is it really that bad?”  “Maybe I should go home and manage it there” “Maybe there is nothing there and I’m just,  I dunno…” “I’m not being crazy right?”  It’s sad to say I will continue to question myself until the my kidney doctor comes in to clear it all up for me.  I cannot get that piece of mind until I receive his professional opinion which is the only one that counts to me.  I dread the day he retires.  I will not know what to do then.  Keep in mind this is just for the kidney disease portion of my illness.  Start taking into account my ehlers danlos, chiari, stomach diseases, and you can imagine how awful it might be to be constantly questioned and second guessed to the point that you can’t help but do it to yourself.  Unfortunately this isn’t going to be one of my motivational blogs where I offer advice on how to overcome this or how to deal with it and push through.  I haven’t even figured it out.  I have my methods of dealing with doctors and overcoming all sorts of aspects of being chronically ill, but when it comes down to it and you are in the hospital and very ill, it’s very difficult to stick up for yourself.  This will probably be the point where you need your support team (or a member of your support team) with you there to fight your battles for you and have them lose their patience with the doctors and put them in their place.  There are just going to be those moments where no matter how badly you want to be able to address a problem like a healthy person, you cannot.  All you can do is hope you are able to be in a hospital where your specialist is located and can treat you properly.  Have I been on the other side?  Of course!  I’ve been in the hospital in another state, traveling and it was even more of a disaster!  Everytime you think you have seen it all or know what to prepare for, something more ridiculous happens.  I have even had a nurse come in to put in an IV … while trying to stick me and get the IV in (MULTIPLE TIMES) she was chatting on her cell phone!!  Yes, this is real life people.  And they think I’m the crazy one?!

So, as per the advice I often offer(so I can contradict my earlier statement, i just can’t resist), first and foremost be prepared the best you can, and mostly be prepared for the unknown because that’s what you will get when faced with an emergency room or hospital and you have to work with all new doctors and nurses and go through the whole circus act again. It’s bad enough we have to keep ourselves prepared for the unknowns of our illness, now we must be prepared for the unknowns of our treatment. Next, make sure your support is with you, because lets face it, they are the only ones there that know you are sane and can be your advocate.

If you take away anything from this post, I hope it is that you are not crazy! ;o) We all have been there, we will all go there again, we will be doubted, we will doubt ourselves, all the while suffering through whatever our disease decided to throw at us at that moment.  We will over come it, it might be the hard way, it might be fighting everyone every step of the way, but we will overcome it.  If anything gives us piece of mind, it is that there are others like us out there.  Why do you think there are so many Facebook groups and online support groups, initiatives etc.?  Because it has given us the piece of mind and the opportunity to meet others like us, share our stories,and come to the realization that many of our stories are very much the same!  Even more so, these support networks have given us a voice.  A voice I can only hope will become louder and louder as we unite to demand better treatment for all we experience. The networks and the people in them have enabled us to find the sanity in our insanity.  What more could we ask for than the small moments of clarity we find with each other?  Before we know it, everything will cloud up again, but now we have more than just someone to turn to, we have people that understand.  We have a family to guide us out of the clouds.

~Just a Regular Sick Girl

Image by R-Becca