It's something I've seen a lot lately- Fellow Zebras struggling with the frustration of an illness that is so misunderstood. Many of us will tell you (even after diagnosis) we don't understand the disorder, and almost every person with EDS has experienced doctors who don't understand our condition, or worse, who roll their eyes at our pain, or tell us in one breath that we should have our heart checked and in the next breath, that they don't understand what we're complaining about, that EDS is a "minor" condition.
I personally saw two orthopedists before finding the one who actually diagnosed me- one who told me that the "significant arthritic change" seen between the two MRIs I was given six months apart didn't tell him anything and didn't explain my severe pain, and that was it- he didn't want to see me back, he didn't believe I needed treatment for my pain and he offered no follow up... but believe it or not, the second doctor was worse;
He laughed in my face.
Prior to his laughter, I sat through an excrutiating appointment that my husband had driven me to. I calmly but tearfully explained how I'd gone from being a healthy active cop, loving my job despite struggling with my intolerance to the heat, and how, since my pregnancy, I could barely make it to the toilet twice a day because of how much pain I was in around the clock. I patiently explained as best I could, the severity of my pain, the constant cracking, sliding and popping of my joints. I explained how my hips. shoulders, one knee, and my fingers and toes, were dislocating around the clock from the most minor of movement. He barely said a word during this interview before my "exam". I told him that an orthopedist who no longer accepted my insurance had suggested the cause of my problems was Ehlers Danlos Syndrome, and that my joint pain had severely worsened after stints in the hospital where I was treated with ciprofloxin and levoquin....
And then in one breath he dismissed my pain like I had finally reached the punchline of a long joke.
"First of all," he started condescendingly- " Ehlers Danlos Syndrome is very rare. You don't have it." (Mind you, he hadn't laid a hand on me to examine me, he hadn't reviewed any of my films, nor did he take ANY family history)... But that didn't stop him. "Second - Ehlers Danlos doesn't cause ANY pain, and certainly not the "severe" pain like you are claiming to have." He made sure to stress the word CLAIMING.
At this point, my mouth was hanging open from shock, my husband, thankfully with me for that appointment was speechless. Oh, but he wasn't - he went right on, "And how do you know you've dislocated something?" he chided me, clearly amused. "I wasn't made aware that you have a medical degree."
The Physician's Assistant squirmed, visibly uncomfortable. He was stunned, speechless and glanced at me sympathetically between staring HARD at the floor.. The "doctor" continued to belittle me for several straight minutes, asking questions he didn't allow me to answer and quoting "facts" about how I don't have any of the "physical features of someone with EDS". (He was mistakenly listing symptoms of Marphan's Syndrome, a similar condition that, similar to Downs syndrome, has visible physical traits). He went on to tell me that with no history of heart issues (I remind you, he took no family or health history, so he had no idea I DO have a history of heart palpitations and a diagnosed murmur.)- but he was VERY SURE that I couldn't possibly have EDS. And with that, he literally dismissed me with a wave of his hand and WALKED OUT OF THE ROOM. telling me as he walked out that he had, and I quote, "Real Patients with REAL problems. You know, like broken wrists."
His PA offered some consolation: He did believe my pain was real. He admitted that he knew nothing about EDS and that the "doctor" clearly didn't either. He told me that the doctor "really only deals with things like broken bones" and probably isn't the type of doctor I'd need (understatement of the year!). I've never cried in front of a doctor, but that day I did.
I left frustrated, angry, and I believe that was when I first said it; "I wish I had cancer."
How could anyone think or say such a thing, right? But allow me to explain.
When you are told you have cancer, a doctor sits you down and gives you a serious diagnosis. They generally treat you, and your family, with compassion and understanding that the words they are telling you are about to change your entire life - and quite possibly your lifespan, and most definately, the quality of that life for some period of time.
When you are diagnosed with cancer - 99% of the time, you have a disease with a name and some type of understanding. In the moment that I spoke those words - I was thinking so many things. Here is a discussion of the comparison between cancer and Ehlers Danlos Syndrome. I apologize for my blunt-ness, and please know that in NO WAY am I trying to claim that anyone "wishes" to have cancer, or is down-playing the devastating ways in which cancer destroys lives.
EDS, though, is an ugly nightmare: It has no cure- it lasts forever, it never gets better, but it probably won't kill me.
Cancer VS Ehlers Danlos Syndrome
Lifespan and Quality of Life Expectancy
- With cancer, generally, you either get better or you die. One doesn't generally develop cancer, and live
with it for seventy plus years. Most often after diagnosis, cancer is either treated, or, in the tragic cases, it can't be, or the treatments available aren't successful. Either way, the most common likelihood is that within a few years or diagnosis, you will either be cured, in remission, or have succumbed.
Most types of cancer are either flat-out terminal or treatable - but either way, doctors usually have SOME information about what you can expect, both short-term and long-term.
- With EDS, *if you even get a diagnosis* some SEVENTY FIVE percent of the doctors you'll see after
that diagnosis will have little to no understanding of what EDS is, how it impacts its victims, how or if
there are any ways treat its PLETHORA of symptoms, and many doctors flat-out insist that EDS
doesn't cause pain because they can't point to it on an xray. A person with EDS will generally continue
to physically deteriorate for their entire life, with new symptoms comong on, and present symptoms
worsening or constantly changing. Only one kind of EDS is USUALLY terminal (type 4, vascular,
which can and often does affect a person's organs. ) - the rest of us can expect to live a fairly long
"normal" lifespan.... most of which will involve constant symptoms and ongoing suffering.
Being Tested and Diagnosed
- You can be tested definitively for cancer. Tumors can be seen on scans and x-rays and some can by
physically cut away from the body. No one doubts cancer exists or dismisses it as "minor."
- There is no genetic test for the most common type of EDS (hypermobility type - or Type 3 - it can only
be diagnosed by completing a physical assessment AND by taking a long, complete medical history and a
complete family history. They have to look at the extensive list of symptoms and determine if you have a
certain number of possible symptoms *and then* rule out all other conditions that are likely or possible to
CAUSE those other conditions - so lots of expensive blood tests, scans, xrays and biopsies, all of which
will, with EDS, show doctors NOTHING.. EDS can't be diagnosed on any xray, MRI or other scan, it
doesn't show up on a blood test. We don't even know what gene causes the most common type.
So pretty much.... good luck getting diagnosed!
Seeing a Specialist
- If you have cancer, you'll need to see an Oncologist.
Oncologists are specialists who treat cancer and cancerous tumors - there are THOUSANDS of cancer specialists, and the United States along has THOUSANDS of hospitals as well as entire medical treatment facilities that cater to cancer patients and assisting their families. There are nonprofit pediatric cancer centers where patients and their families receive treatment free of charge through donors and there are thousands of charities raising money for the MANY types of cancer. Cancer is the single most well-funded medical research topic and a cure for cancer is the number one priority of no less than THOUSANDS of scientists. If you have cancer, you can be seen in ANY hospital or by ANY doctor, and there is NOT ONE physician on the planet who doesn't know what cancer is.
- If you have EDS, no one is quite sure what type of doctor should diagnose EDS, let alone treat us.
Let's be real - the human body is FULL of connective-tissue, and if your connective tissue is faulty, which is what EDS is, you're going to need a doctor who can treat the symptoms you're dealing with.
Wait - did I say *A* doctor? Nope: Try MANY doctors. Oh, and don't forget - you'll have to try to find one who knows what EDS even IS and it's likely they have never even have heard of EDS before you came into their office. You'll need:
-A GP (general practice) or Internist: One who is actually patient and has time to spend with patients, as you'll be in frequently, often trying to decide what type of specialist you'll need to see next.
-A cardiologist: To rule out Type 4- or if you have Vascular-type EDS, they'll need to monitor you closely throughout your entire life.
-Pain Management: Most general practice doctors can't or won't treat long-term pain due to liability, so you'll need to either deal with the severe pain or find one of the dwindeling number of pain specialists who actually treat non-terminal, life-long pain patients. Best of luck - less than 25% of patients with EDS appear to have proper pain management options in place as of a recent survey of over 8,000 of us.
-A Neurologist: For occasional symptoms from unexplained pain to issues with balance, memory, etc.
-A Psychologist: Along with chronic pain, and ADHD-like symptoms, we also often have chronic fatigue, depression and anxiety. Making this list of doctors is depressing enough... but when you get a referral, be sure your primary care doesn't write you off as having mental illness and not EDS - this happens a LOT.
-A Gynocolgist or a Urogynocologist - men will need a Urologist: Bladder problems such as interstitial cystitis is very common, and many women with EDS have constant hormonal issues.
-A Rhumatologist - To treat the systematic arthritis from the chronic joint damage - but also to rule out lyme, lupus and other conditions that can mimic EDS symptoms. Beware: Most will presume you have
fibromyalgia and may deny you have EDS entirely.
-An Orthopedist / Orthopedic surgeon - Mine diagnosed me - and helped set up bracing, get me a wheelchair and pushed for my pain management acceptance. You'll need one to repair the ongoing issues with joints as they deteriorate, and hopefully to prevent things from getting worse. Try to avoid surgery!
-A Gastroenterologist - for all the GI related issues which are very prevalent in EDSers. You may also need a nutritionist or other specialists if you've got severe enough issues to need a feeding tube or other similar treatments common to EDSers.
-A GREAT Dentist, Endodonsit and Oral Surgeon - Since EDS affects your teeth and gums (which are chock full of connective tissue) - you can expect that your teeth will someday (suddenly) fall apart and many will need to be pulled. I have thirteen of my real teeth left at age 34, and until 28 I'd never had a cavity. Sorry to scare you.
-An Endocronologist - for thyroid related issues, again, very common with EDS.
I think that's most of them....
Being Understood / Your Friends & Family
- If you have cancer, you will have the utmost in sympathy from anyone who finds out. Cancer patients are often given the highest degree of respect and understanding because everyone knows how serious and devastating a cancer diagnosis is. No one yells at a balding cancer patient as they walk into chemo treatments from their handicapped parking spot - and you can be sure that your friends and family will LIKELY support you in every way possible. If you look exhausted and sick and tell a perfect stranger you have Cancer, they typically understand immediately your struggle. No one will expect you to "fight through it" - and you can expect to be understood and received with compassion and care most of the time.
- I shared this frustration when I was at my rock bottom-i was pre-pain management, I was in worse pain than child birth, 24/7, and i couldn't take much more.... I believe my exact words were- "If I had cancer, at least there would be an end in sight, death or remission."
If you have EDS, there's a good chance that you look fairly "normal" and many of us, especially early on, do not have any highly visible medical devices. Limping could easily be faking, and when you're not up to getting out of your pajamas, or when you park in a handicapped spot and you're under 50, you can expect to be interrogated by perfect strangers. Your family MAY support you - until you miss a big planned event or fall behind on helping around the house, and then you may find that no one REALLY believes you're ill. After all - no one can SEE broken connective tissue, so how do they KNOW you're really in pain, exhausted, and feeling horrible all of the time? I have the single most supportive husband I've ever met - and even he has occasionally suggested that I should try to "do more" or loses his patience when I've had several bad days in a row and can't keep up with things. MOST people with EDS aren't as lucky, and many of us have very little, if any, actual support from loved ones, since EDS is so misunderstood. Strangers will very likely have ZERO CLUE what EDS is - so you'll either need to give a long-winded explanation or expect that they simply won't have empathy for your situation. You can expect to hear things like "But you don't LOOK sick!" or "But yesterday you were able to go to the grocery store and lift a bag of dog food, but today you can't even get out of bed?"
Seeing Doctors / Recieving Treatment for Pain
- Have you ever heard of a doctor saying to a cancer patient; "Sorry. Not sure who to send you to or if
there's anything anyone can do for you." Hell no. If it's incurable and terminal, at least they can be informed- but many of us are left with way more questions than answers! Cancer patients were some of the first to be granted access to medical marijuana, and in all fifty states, provisions that limit the treatment of people with opiates and other powerful pain medications exempt cancer patients - after all, cancer is VERY painful for many people, and of course that pain deserves to be treated in the best way possible, right? The side-effects of cancer treatments are well-understood even by people who have never known anyone who's had it, because cancer is all over tv shows, movies and in the media.
- Many of our own doctors have left patients to Google "what is Ehlers Danlos Syndrome" after diagnosis, leaving us to imagine the worst, and giving us no direction or support after telling us "Hey, you have an incurable and permanent illness that will never get better and will likely get much worse." Unless you were a big fan of House, you've probably never heard Ehlers Danlos Syndrome said on television, let alone seen anyone in any sort of film who's living with it.
Going to the ER? Or a new doctor? When you tell the doctor there that you have EDS, half of them will roll their eyes at you or flat out say they have never heard of it. Most won't realize that this means certain antibiotics are off-limits, or that anesthesia and pain medications likely won't work properly, among dozens of other concerns they should have about how to treat you.
Many of us wish we could at LEAST have our pain validated by random strangers when we feel our worst, but the reality is that most people will have never heard of our condition or have ANY idea of the plethora of ways it negatively impacts your life. Sorry.
So... What Are My Options?
- Cancer at least, most types, have treatment options. Even if it's not a guarantee- there's a chance surgery, medication, radiation, chemo, could cure you. If you HAVE a treatable kind, but the treatment would be extensive, dangerous, or destroy your quality of life, you have the right to deny treatments and you can choose instead to die. Cancer that CAN be treated, often has a variety of treatments from surgeries to medications, radiation, chemotherapy, transplants, tumor removals, and many many more. When you are diagnosed with cancer, doctors make plans, follow-up appointments, surgery dates. You are offered support services, counseling, and a host of charities offer transportation, funding, even help for your living situation while you're in treatment.
- EDS patients have no options. When you are diagnosed with EDS, Doctors pretty much say "Okay... so, now we know what's wrong. But... why are you here? There's nothing we can really do for you." Many doctors are very hesitant to give pain medications, since many are often ineffective due to our genetic predisposition for them to not work properly - and even the medications that do work only do so for a period of time before they stop... which means that many doctors want to hold off even if your pain is EXTREMELY severe - because eventually, you'll run out of medications to try. There are NO treatments for Ehlers-Danlos Syndrome. The only thing they can do is try to assist with individual symptoms. I know that if many of us could give up a breast, or a limb, or even our reproductive organs or to have major brain surgery, or a very painful bone marrow transplant - we would jump at the chance to be allowed to return to an illness-free life - but none of that is possible. EDS is forever.
- If you have cancer, you can go to ANY hospital, and expect prompt treatment and immediate concern- even if all you are is nauseous from recent chemotherapy. You'll be admitted long enough for whatever treatment you need, and your concerns will be taken seriously.
- If you have EDS, you will LIKELY be treated like a psych patient or a drug addict, almost four times as often as you'll have your concerns heard, your pain treated appropriately, and even when you ARE treated like a human being, there's likely not much that can be done for many of the most common symptoms. Sure, they can reset your dislocated (insert joint here) - but they will likely send you home without pain medication, and that joint may very well dislocate again before you leave the parking lot. Best of luck. :-/
Treating the Mind and Body
- If you have cancer, there's a good chance that your doctors have already spoken to you about things like positive thinking, and may have sent you to a psycologist for an assesment of how you're coping with the news of your diagnosis and how you're handeling treatment. There are yoga groups and massages designed specifically for those undergoing cancer treatments and everyone agrees that spiritual health is so important.
-If you have Ehlers Danlos Syndrome, one of the most common things you'll face first is being prescribed physical therapy- yet most physical therapists want to treat us like everyone else- and things like stretching, yoga, strength training- these OFTEN only serve to WORSEN our condition and pain. Yoga and any stretching can cause pain and worsening dialocations and few doctors truly understand that Ehlers Danlos Syndrome is ALL CONSUMING and affects ALL areas of our lives, so often psycologists are only suggested if they suspect we're exaggerating or faking our symptons entirely! We can tape ourselves from head to toe, wear every splint and brace known to man, get a service dog, handicapped tags, use a wheel chair, a shower stool, but in the end- there's no treatment for EDS. There's pain management for those of us lucky enough to have doctors who care and understand- and there's coping. That's all there is for us.
Sure, it may be a case of "The grass is always greener ". Sometimes, when you are suffering endless frustration, dismissal from doctors, hell, not even a real diagnosis (I'm still waiting, over three years in, for disability income- if it wasn't for family and my husband, I'd have starved to death or committed suicide by now), so I can't IMAGINE how people who are more broke and who have LESS family support are able to handle this disorder. It's no joke.
Many of us suffer, day in, and day out, with severe pain that's akin to a cancer patients' suffering, and when we visit doctors, they tell us " EDS doesn't cause pain " or that were "drug seeking". If you had cancer and asked for pain relief- do you think any doctor would roll their eyes at you or claim you're not actually IN that much pain?
I'm in no way trying to trivialize cancer. Like many EDSers, I'm just hoping and wishing we might be more understood and have similar hope for things to be getting better, instead of just worse. So if you hear a chronic pain patient compare their journey with that of Cancer, please try to understand... it's not that we are trying to say that EDS is WORSE than Cancer -it's just that, simply put- everyone knows what Cancer is. Even little children see commercials and know it's a big scary illness.
It comes down to this - no one wants to have cancer or Ehlers Danlos Syndrome.
All we want is a little more compassion and understanding of what we deal with 24/7.
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.