What makes it difficult

sheep_leap.jpgAgain, I’m inspired by something another blogger said.  You see, this blogger is on the other side – she’s the “patient” or the one with EDS (Ehlers-Danlos). I realize it must be difficult to be on that side – where the person who’s involved with you is not “handicapped” by a debilitating illness. I’m assuming that she sometimes feels somewhat guilty (read on), and on occasion perhaps even like a burden to the people who love her or are close to her.

I get that because my soon to be 17-year-old daughter feels that way at times. My daughter is also on the other side. Because she is my child, I have arranged my life and my career around her needs. She knows this and any little struggle on my part disturbs her or makes her feel bad. But really, on my side of the fence, what truly makes it difficult, is seeing someone I love struggle with an illness that is misunderstood by all and sort of “silent”.

It’s difficult because the interactions with most friends, strangers, family members, and healthcare professionals are a total burden. These interactions are tiresome and exhausting.

That being said:

How many times will I have to explain to everyone that she can’t sit for long, or can’t walk that far, or can’t stand in line, or can’t wake up?

How much “proof” will one need to realize that there is something there underneath these symptoms?

And NO, the person I love – who is making all these efforts in front of you – is not faking or making this up.

These “crazy” interactions are what makes it difficult. It has NOTHING to do with the person I love and who I choose to take care of or be with. The burden are the people on the outside of the circle – the ones who have no clue and simply choose to close their eyes because it has nothing to do with them or they don’t understand and are not “curious” enough to want to know.  And believe it or not, I go through that on a near daily basis, and sometimes more than once a day.

And this is what it’s like:

Last week, my daughter was scheduled for a stress test. The doctors (not all but some) and the other healthcare workers involved are trying to prove that there is nothing wrong and that it’s all in her head. The stress test was the last of a series of test to evaluate the possibility of various cardiovascular problems associated with EDS. This last one was the most challenging because I know what it’s like for my daughter to stand and the idea of her having to walk on a treadmill was even scarier because on a good day, she can barely walk 20 meters without having to sit down and that is at a very slow pace.

The test was done in the presence of an internal medicine physician who people refer to as “the” cardiologist. As he was standing next to my daughter who was evidently struggling on the treadmill, my heart was broken. Her feet were dragging from the start. I can still hear the “squish squish” sound of her running shoes dragging on the surface. While she was walking, she actually reminded me of someone with cerebral palsy. You could tell that something was totally wrong with her joints – or the way her body moves.

In the end, the so called cardiologist told me her ultrasound was normal (one of last week’s test) and that all he could see was “a completely out of shape person at a 70-year-old endurance level”. And then he said “I’m not here to give you a diagnosis”, which I think he actually repeated three times (I guess someone told him I had invented a diagnosis and I was expecting him to confirm it). My voice quivered as I replied “I know” – I was still hurting from seeing my daughter struggle. When I attempted to explain that she was like that as a very young child although she was more mobile he replied “You can say whatever you want, this comes from her being totally out of shape”.

When you go back with that kind of “vibe” – the vibe where they are silently transferring the wrong message out there because they know nothing and are not interested, this is when it becomes difficult. The trick I guess is to go home and not think about it.

On my side, I have to remind myself not to stoop down to “their” level because really, they are the ones that make it all so important and so difficult. So what if my daughter can’t stand? Just give her a damn chair. I have to let it go – only then can things become easier.

10 thoughts on “What makes it difficult

  1. I am so sorry you are going through this. I first read your post last night and had to let all that you wrote soak in. There is so much here and honestly, I can’t understand most of it. Why are the doctors so reluctant to diagnosis her with anything other than out-of-shape syndrome? Is it arrogance? Is it ignorance? Is it stubbornness to agree with you? Good grief. I just went to Wikipedia and read about EDS and I just can’t understand not wanting to set up therapy programs and such to try and see if they would help relieve your daughter of the vast amount of pain and affliction she is experiencing. Why is the idea she is faking it the default diagnosis? All I can say is hang in there and be as strong as you can. Get sleep and take care of yourself. And also know you are not alone. You have your blog and through it you can reach out to others and let your frustrated voice be heard. I am listening, talk to me. :-)

    • Thank you, from the bottom of my heart for all that you wrote in that comment. It takes only one person to “ruin” someone’s day or chances of getting the right treatment. Our family physician being away we dealt with a nurse practitioner who simply made things worse by comments I know she made (because they were written in my daughter’s file) and others I suspect she made to other health care professionals. It’s a long story here – it started with the nutrionist – and then the nurse insisted that my daughter should go through a psych evaluation to rule out suicide risk. My daughter and I felt it would “burden” her medical file and refused. But then she convinced us by saying no “bad” information would be added to the file. Then I found out she had referred my daughter to the EDS cardiologist on the basis that she was ” a patient with long term health complaints and psychiatric problems”. I wondered at the time why the cardiologist had put her file aside on a year or more waiting list. Then, the nurse completed a “psych” report saying my daughter sat in front of the computer all day. I think she may have sent that to the cardiologist along with the rest of the file. My daughter is in bed most of the day, and when she gets up she has a comfortable chair where she can raise her legs and chat with friends – but mostly she watches tv shows on her computer. When I saw the internal medicine guy, he had a strange attitude with me and it’s obvious that the nurse had spoken to him. So now, I have to go back to the file and ask for the psych report and make a formal complaint on that woman as well as have the document removed from the file. The only thing is, it’s a delicate matter because my family physician was the one who mentioned what had been put in my daughter’s file when I told her something was odd. It’s now a big mess all over again.

  2. What a little stinker. I was supposed to do a stress test. I said no. Why bother? So they can see that I’m deconditioned? I can tell them that. I’m quite up front about it. Your poor kid. Let her know I’m out there giving it back to the jerks for people like her. ;) I’m not the only one, so maybe by the time she’s my age, medical culture will have changed a bit. I’m sure the baby boomers are going to make an impact on the holier than thou healthcare provider culture. Sort of makes me chuckle to think about it.

    Here’s what kills me. If we EDS or other mystery/rare diagnosis patients are truly just mental, then where’s the compassion that health care professionals should be showing to people with mental illnesses? The lack of that compassion is, to me, pretty clear evidence that these providers hit on mental health diagnosis not out of a reasoned, carefully considered scientific thought process but out of a desire/need to invalidate what they don’t understand…or out of intellectual inadequacy or laziness, or just plain old bias. When they act like this, it’s clear to me that they aren’t saying “you’re mentally ill”. They are saying “you’re crazy”. I’m sure you’ve notices that the ones who seem quickest to declare patients mental are the ones who have little to no mental health training.

    Your primary care should know about this, if it was her nurse’s poor choices that put your daughter in this position. I know it’s awkward but it’s something she should be aware of.

    • Yes, our doctor knows about this (not all the details of course). But I think she’s not in a good position at this point. She’s from France and is sort of “employed” and I suppose at the mercy of all sorts of crazy things going on. She has no power over the staff. But I think that as patients we have more than we know. I need to look into this to see what I can do. My first step is to get an integral copy of the medical file.

      As for mental health issues, my daughter is probably one of the most stable person I know. But if you stop to think about the people who put “emphasis” on finding mental issues, they are the ones who should be looked at. I remember how I thought the nutritionist was “disturbed” when she was arguing with us for no reason. I remember thinking “what’s wrong with this woman”.

      • Good point. After the last appointment I had like that, I promised myself that the next time it happens, I’m going to exit rather than stay and debate. And then I’m going to tell my insurance company that they shouldn’t reimburse since it was not an appointment but a doctor having a tantrum.

  3. Oy vey. Sometimes I have no word in English. This is what I went through for 12 yrs with the fibromyalgia misdiagnosis–and how I got the terrible depression, but I don’t have this problem with doctors now that I have the (correct) EDS diagnosis. Is it because I have Type II, and not Type III, or because I nearly lost my vision due to it? I’m so confused…

    I know it would be so much work, but there must be a way to rectify this for your daughter. I have a need to fix things, which you’ve probably gathered. :-) I presume you have one big file under a nationalized healthcare system so everyone gets to see EVERYTHING. Would it be worth having the new psychiatrist that you like write a letter to add to her file? I’m wondering if stating, in his opinion, that your daughter does NOT have a psychosomatic disease and suffers from depression (and/or anxiety) due to her health issues might give you some more clout? Why don’t these doctors realize this is a documented occurrence and a natural process?! Even this article on my Type II (Classical Type) states:
    “Long-term chronic pain may result in the need for mental health services.” (Big surprise!)

    http://www.ncbi.nlm.nih.gov/books/NBK1244/

    I do know why you feel like you are drowning. It will get better one day; you have to hold on to that little shred of hope and never let it go…

  4. I think all I need to do is have the comments removed from the file. I’m going to call the Province today to see what needs to be done exactly.

    Receiving the appropriate diagnosis is important – I’ve been to a few physiotherapy sessions with her and it’s unbelievable how her body doesn’t respond the way a “normal” one does. She needs help in many ways. I think my daughter most probably have type III, by then I look at my mother and she has the really loose skin (and she was never a big person but still it looks like she lost 100 pounds), huge scars, and she has had a uterine prolapse all of which i believe is typical of the “classical” type. My mother is also blind and had been complaining of eyesight problems for years even before she ended up having a stroke.

  5. I love that you can just have things removed from the file (I hope). Our system is such a screwed-up mess!

    EDS is weird genetics-wise, but it does “run true.” My mother has mild symptoms, but my grandfather was a mess. He had RA too, so we just assumed his pain and fragility later in life were from that. He could pop his hip in and out when he was younger, which is not that common except in type III, but my geneticist was trained in EDS (I went out-of-state) and I am not crazy hypermobile, plus I have some skin and vein oddities. My grandfather had myopia but could wear glasses and pass the vision test to drive (until he had a stroke, too), so if he had KC, it was mild. Let me state that he was a chain-smoker to not worry you about the stoke like your mom!

    Like your daughter, I can’t “find” myself in my family, but it’s obvious it’s my mom’s lineage. If your daughter does have EDS, it has to be Type III I would think. Maybe you’ll be dealing with a dual-diagnosis? EDS + X. My geneticist did say there is a lot of overlap in the types and wide ranges of severity in families, if you never heard that. I don’t know why they grouped Types I & II together. Type II is much less extreme as far as the skin complications. I have a post on my diagnosis that details my symptoms if interested. I have some of your mom’s issues, but EDS skin is stretchy and bounces back and I’ve even heard that we age better. Oh, good! I do think I look younger than my almost 39 yrs, but maybe it’s my bad vision… Lol! Makes no sense when collagen is involved. Really loose skin like your mom’s is usually related to another CT disorder called Cutis Laxa, which is super rare, but leave no stone unturned I say. Hmmm. Back to the drawing board. OK, I’m really going to bed now! :-) I’m still working on shorter comments…

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