Frightened of Losing Your Diagnosis?

img_8897-1Before diagnosis, the decades in the wilderness where I did not even have the words or constructs to understand my pain and exhaustion, never mind anything to understand them, it was terribly, terribly lonely and very, very frightening. I stumbled around in the dark and had absolutely no idea where was I either going to or coming from. I am sure I did the old proverbial “walk around in circles” thing on many occasions without even knowing it.

Then came diagnosis. As I look back on the two years since then, the journey has been just as crazy. But it has been very different too. Diagnosis may be the end of one journey, but it is also the beginning of a new one. A way less lonely journey. Before diagnosis, there was just me. I had no tribe, and I belonged nowhere. Post-diagnosis, I have become a vital member of not only a tribe but an army. I am a Zebra, I belong to The Mighty, I am a team member of many groups, and I feel as though I contribute and make a difference in some small way. I have all the benefits of belonging to a tribe, and I no longer walk alone in this part of my life.

But that diagnosis keeps threatening to change. As each new specialist throws in their opinion (whether asked for or not), as criteria for diagnosis evolves and tightens, and as new discoveries are made, especially in genetics and science labs, the fear of being kicked out of my tribe is great. What would happen if I was told I no longer belong? What if was sent out into the wilderness again?

There are massive potential problems and complications for medical insurance and doctor options when losing the diagnosis, but in many ways, the scariest part is the fact that I would be back to where I was before. Out there in the desert again, a lonely leper.

But the reality is that the door to diagnosis wasn’t just about the specific diagnosis. It felt like it at the time, but in truth, it just led me to find a larger and more complicated tribe than simply the EDS Zebras. I belong to the Chronic Illness world which includes the undiagnosed! It turned out that I belonged to a whole tribe that I didn’t even know about, that I didn’t know that even existed, never mind how to find them!

When Fibromyalgia was added to my official diagnosis, I wasn’t stumped and lost like I was after the EDS diagnosis. Instead, I simply popped over to the other “department” of The Mighty, asked around my “Rare Diseases” community, popped the questions on MY Facebook page instead of having to search for new people, and had more answers than I could cope with within the hour. If I was to lose my EDS diagnosis tomorrow, I would not be all alone in the wilderness again, I would simply slightly adjust my position among my comrades.

There are over 200 Connective Tissue Disorders (CTD) and every doctor, no matter their other opinions, agrees that I, and my children, all have a CTD. They also agree it is genetic as we all have the same symptoms. Most of those CTDs fall into one of a small handful of categories, and we are very clearly (thankfully) ruled out of most of them because they do have specific tests. The closest fit and the only category left are the Ehlers Danlos Syndromes, so while we still don’t fit very neatly into one of them yet, the doctors tell me it doesn’t really matter which one because we can’t fix it anyway.

When I think about it with my heart I get fearful and anxious. I can’t help wanting to be more of a certainty. I am frightened of being a “token” member instead of a “real” one. The memories of the wilderness are all too near, and they haunt me in my weakest moments. Pleeeease don’t send me back out there to Leper Land! Pleeeease let me stay here in the safety of my tribe! I am a zebra, I always have been and I always will be.

But when I think with my head I know that for the most part, they are right. And no matter and change in diagnosis, I will always belong to the tribe.

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Where you can find and follow Jennifer:

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@JPeaSmith
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Cross Roads!

img_9244-1It’s been too long. I had no idea how long in fact, that I’ve been away from this beloved blog, this voice that helps me get through so much of my life, and I apologize for my absence. Thanks to all of you who have stayed and not unfollowed in the meantime. It has been about 6 weeks, and I feel like I have been on a massive journey that I am still on in many ways. But I see some light at the end of the tunnel (and pray it isn’t a train!). I don’t want this to be too long and boring, so I’ll keep it short then hopefully go into more detail as and when needed, over the next few months.

  1. I’ve been away. It is winter here in the southern hemisphere, so we are all hunched down in front of fire places and heaters rather than galavanting around the countryside, but July is also one of three birthday chunks in our family, and a big meeting time for my other half. So I have only spent 6 nights in my own bed since the middle of June but I have been far and wide, caught up with special people, and celebrated birthdays in London, Oxfordshire, Perth (Australia) and Gosford (also in Australia). So it’s been hotels, couches, and 7 different beds… no wonder I am behind on so many things!
  2. I’ve pushed myself a bit hard and so my pain levels have been a little worse than usual, although winter is usually worse than summer anyway. So I have been very sore and wallowing a little …
  3. I’ve been reevaluating my writing and my online presence and while I’m not quite there yet, I am making some progress with finding a space that is less taxing but more permanent. I am reminded how much I love writing and blogging and I must be careful not to lose this …
  4. I’ve seen a new specialist and have a new diagnosis on top of the old one. Fibromyalgia seems to be part of the problem, and while I’m not 100% convinced yet, I suspect that I am in denial and don’t want another diagnosis.
  5. I turned fifty! It hasn’t really changed anything but I have felt loved and I think for anyone, the half way mark is a time of reflection and re-evaluation so here I am!
  6. I think I’m stressed because I am behind on almost everything, including newsletters and writing, so hopefully August is going to be a time of refreshing and catch up!
  7. I have given in to pressure and am about to start my own Youtube channel, which will mean back into the Facebook Live events as well …

Thanks as always and I look forward to unpacking those a little over the next few weeks 🙂

Diagnosis Envy

img_8779-1This is very similar to Illness Envy and I think that it may actually be behind some people’s issues who suffer from Illness Envy. But it is important to recognize the difference because unlike Illness Envy which has no upside, Diagnosis Envy is hugely valid…

Envy is a really tricky word. We hear it all the time in the negative context and in most instances, I think that it is negative. But it is also a very real part of life and also somewhat justified: if a child hasn’t eaten in three days then they would be crazy not to have some envy towards the kid on the bench eating a massive hot dog. In the same way, I own that I envy people who are free of constant pain.

The problem only arises when we don’t recognize it and the outcome is that we hurt others, “steal” their empathy or their moment of comfort and try to make it our own. When we trash others or belittle them in the hope that we will be “seen” or “heard” instead, and that our own pain will be validated.

Last week I was in the doctor’s office, moving slowly with my crutch. I leaned up against the counter with the receptionist behind. She couldn’t see my crutch (though often she can see it) but I think that she had forgotten what I have and that I am in a lot of pain. A man popped his head in the door briefly and asked her a question then left again. The receptionist conspiratorily whispered to me: you won’t believe how much pain that man is in every day! He has this illness that means he is always in pain. Honestly, if that was me I don’t know what I would do… blah blah blah blah blah and on she went…

Um…. I didn’t say anything. It was insensitive and dismissive of my situation. But I didn’t envy her sympathy, I only felt sorry for the man. But I did feel very uncomfortable and dismissed. But it was easy for me because I have a diagnosis, I have my pain validated one way or another almost every day without having to say anything to anyone, and so it is easy to be without envy. But I know what it is like to

I didn’t say anything. Her words, her attitude, and her little gossip were insensitive and dismissive of my situation. But I didn’t envy him her sympathy, I only felt sorry for the man. I also felt a bit uncomfortable and dismissed. But it was easy for me because I have a diagnosis, I have my pain validated one way or another almost every day without having to say anything to anyone, and so it is easy to be without envy. But I know what it is like to not have a diagnosis and be envious of people like me on this side of the fence who do have one. I spent 3o years on that side and it is frustrating and hurtful emotionally as well as physically.

Diagnosis Envy is extremely valid in and of itself, we just need to make sure that we are sensitive with how we express it to others and the way we treat those on the other side of the fence.

Where I hang out: Blog | The Mighty | Facebook | Twitter | Pinterest | Goodreads | Amazon
@JPeaSmith
“We are all broken, that’s how the lights gets in”  –  Ernest Hemingway

Open Letter to the new Hand Specialist.

Dear Hand Specialist,

img_6906I am still processing our first important appointment that we had a couple of months ago and I thought that it might be helpful for both of us if I am able to break down and articulate my feelings during and after leaving your office and to let you know honestly why I won’t be coming back.
I arrived in your office in late winter, on a sunny but cold day. I was dressed as I usually am for most of the year, in long john thermals, thick socks, sturdy shoes, layers of thermals including vest, spencer, long sleeved T-shirt, a warm woollen cardigan and two scarves. I loved your corner office with the winter sun pouring in and I enjoyed that unlike many medical offices where I am often too cold, I appreciated that I could remove both my scarves and my cardigan.
I placed both across my lap as I entered your office and I was a little self conscious that I looked like the Michelin man compared to you in your light layer of clothing. But I am used to that now.
Thank you for your warm welcome and for the gentle way that you asked how you can help me. I truly appreciated that when I explained my condition to you that you responded with what came across as sincerity and honesty that you have never heard of EDS. Thank you also for listening to me as I explained that in winter my aching hands are especially bad and that I have come here today to ask about splints for my hyperextended fingers and compression gloves that can be fitted to my hands. I explained that compression gloves keep my hands warm, the chilblains away and give my tissues the extra support that they need in winter to stop my blood vessels from bursting. I usually use over the counter gloves and they work wonders but don’t fit perfectly.
I explained that I am doing better than expected since diagnosis a year ago, with my small team of wonderful supportive specialists who are managing my energy, my blood levels, my injuries and my hormones. That years of painstaking trial and error, with a large dash of heart ache and agony but a few wins along the way, have resulted in a very precise regime of therapy, rest, and what appears at last to be a winning combination. I explained that I can still drive, go out a little, but that every third day I need to stay in bed, which is fine because then I get to do all my writing.
Thank you for listening to me so well, I felt heard.
But then you answered me and I was not expecting what came next. I felt as though you had listened to my story but then like a judge, jury and executioner, you were now making your ruling on everything about me, all of my body, everything that I do, and everything that I am doing wrong. This is the impact that your ruling had on me:
  • When you told me categorically that the first thing that needs to happen is to get me out of bed I felt dismissed and defensive of the specialists who have put me there, with such hard work and such great results. I felt as though you did not hear me that this is a crucial part of my stability.
  • When you told me that the only reason that I get chilblains is that I am not dressing properly or warmly enough I felt scolded and invisible before your eyes; the Michelin man not only already doing all the things that you are instructing and assuring will fix me, but wearing the exact brand you mention. How do you not see this, ..or me? I want to point out my layers and open my phone and show you the article on Wikipedia with the last couple of lines which mention that regular chilblains may be a sign of a connective tissue disorder, and that EDS is exactly that.
  • When you instruct me not to ever use the internet to look up my condition and you tell me that Bloggers are liars because if they use a wheelchair 10% of the time, that they only blog about wheelchairs, I feel kicked in the gut. When you go on to tell me that all bloggers exaggerate and that as a result I will then get a skewed idea of what my future health will be, I feel an impact again. You don’t stop for breath for me to tell you that the only reason that I got my diagnosis after 30 years is because I have been doing my own Google research, worked out which kind of Specialist to see who would know about EDS and that I myself actually use a wheelchair 10% of the time, ….and that I blog full time and not only about wheelchairs.
  • When you hand me a brochure of products that I might like to buy and tell me that when I come back next time we can look at my fingers and splints (the main thing that I came here urgently for), I felt robbed because you have not addressed what I brought to you and yet I must still pay you for the privilege.
I came here to ask for help with my hands, I was not asking you to start from scratch and “fix me”. I was not asking you to compete with all the other specialist that I have. I am a well functioning proactive human being and even if I didn’t study Biochemistry at University, I would still know way more about my body and the thirty years that I have suffered than you do.
I need to tell you these things even though I will never come back and see you because I want you to know that if you treat every patient as a bunch of text book symptoms, each with only a single solution, then not only will some people leave unhappy as I did, but some, like me, may not be fixed, or worse. I need you to know that as patients we trust you. We need you to help us in our individual and unique issues, and if I didn’t have the background, the gumption, the trust in myself and my specialists, then I could well have taken your advice to my detriment.
I believe and agree that there is a ton of information out there that is not accurate, but also that it comes not only from the internet but also from specialists who misinform either through inexperience, lack of sufficient training, or who see things only through limited filters. I am not saying that you are any of these, but I would love it if you could see that there is a whole world of information out there and that in terms of hands alone, it isn’t only confined to what you alone have learnt in school. Your patients are people, with individual needs, diseases, inherited conditions, and as a hand specialist, a foot specialist, a heart specialist or a surgeon, you each have the opportunity to be part of a whole bunch of teams who can change people’s lives.
This letter is not about what you did wrong, it is about the impact on me, and more importantly, the opportunities that you could and can have for so many people.

FAQ: Is losing your voice a common EDS thing?

I have completely lost my voice for the fourth time is six year, and twice it didn’t come back for three months. Both were pre diagnosis and I think that people thought I was super strange that my cough would not get better. It was so bad that I couldn’t lie down without having a coughing fit which usually landed with me throwing up and on a few occasions I popped a rib.

Now that I know what I have and that I need to take extra good care of myself I have had two coughs and while both resulted in no voice, I knew what I was in for and put myself to bed for a week so that it never got as bad. My voice is now returning after three weeks, but it is still very weak. Anyway, so now that I appear to have had the same thing happen four times, interested people (thank you to them!) have been asking me if it is an EDS thing… So here is the answer:

The short answer is not specifically, however we all have a gazillion things go wrong as collagen tissues make up over 70% of our body, so basically anything can go at any time. What goes “wrong” very much depends mostly on what injuries we get in general in life, plus other harmless “weaknesses” exacerbate things.

Fo example the Epstein Barr Virus (EBV) has nothing to do with EDS, but the EDS is likely why many many years ago I didn’t combat the virus as 95% of the population does. It is such a common a virus, and most people experience it as really bad flu. Some people find it hard to fight and they then get Glandular Fever. We have no idea when I had the virus, but back when I was REALLY sick when we lived in Canada and we had no answers, my doctor tested me for everything and one of the things that they found was that I had the EBV in my system which was still active and I didn’t have enough antibodies to keep it in check. It didn’t cause my cough, that was just something that went around, but my specialists decided that when I get run down (which is all the time), I can’t fight hard enough and so when I got this terrible cough, the EBV attacked my throat hence the lost voice.

There is massive fatigue with EDS due to the amount of work our bodies use to function normally, but throw in a virus especially one like EBV and it’s not a good combo. I didn’t have a diagnosis yet but they knew at least that something was very wrong, and so I was put year of complete rest. It took me the whole year to recover my voice and to regain a level of normalcy and was able to rejoin society. I had given up a year of my life and got my head around the fact that I would only function on about 50% for the rest of my life and what that looks like. But still with new rest measures etc it wasn’t enough and now I’m down to about 30% function which is hard to measure, but yesterday I badly sprained my thumb opening a teabag sachet 😦 …and I either sprain or sublux a joint somewhere in my body at least half a dozen times a week.

So it doesn’t take much to wipe me out and when it comes to catching a cough, the EBV / EDS combo strikes hard. I am frustrated being without a voice again but thrilled that I listened to myself and that I am armed with the knowledge of how to do the best thing for my body. A week of bed rest is hard, but with writing, blogging and the online Spoonie network, it works…

RUOK?

Just in case you missed it, Today, Thursday September 8th, is RUOK day (are you ok?).

I cannot begin to tell you what this concept means to those of us with chronic lives to manage, …but I am also keenly aware that this applies to absolutely everyone else just as much. Too many people in my life have told me that they never ask because I appear not to need it, and yet I reckon that I have needed it desperately every day of my life! …and not only that, but…

1: I am pretty sure that if a whole ton of people had asked me this many many years ago I would be in much better shape than I am now, and I would have maybe even been given a diagnosis earlier…

2: About 6 years ago someone did exactly this… they not only asked me if I was ok, but they meant it, they listened, they loved me, they referred me and they walked with me through the long journey to getting help. It didn’t lead to diagnosis yet, however it did lead to me being put on enough rest that I could get my head around what I did need, which in the end lead to the care that I needed.

Go on, ask someone if they are OK today, and mean it, listen and don’t judge them or tell them how to fix it 🙂

Upcoming EDS Symposium!!!

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I don’t know how to stress strongly enough the importance of the upcoming EDS International Symposium in early May (2016)!!!! This is going to be life changing for sufferers all over the world for so many reasons!

The first is that the two biggest EDS support organisations in the world are going to be combining efforts and I think that it is fabulous to see the UK and USA join forces with each other, the European organisations, and the rest of the world (and the many tiny organisations which rarely have their say) and pool their resources like never before, to form a single international organisation woohoo! My understanding is that EDS UK and EDNF will still exist and rightly so, as each country or area of the world still need local support and information, but up until now there has not been one single world body, and worse, there has been so much confusion between the organisations, over terminology and diagnostic criteria that is anything from inconsistent to downright contradictory. One consistent voice will be AMAZING!

Secondly, that voice will not come from one or two professionals in a vacuum. I have been blown away by their care and the lengths that the Symposium organisers have gone to, to ask for, and hear the voices and experiences of sufferers world wide! The use of the internet, with social media, videos, surveys, you name it, they are searching far and wide and asking soooo many questions of each and every sufferer at every corner of the world, to share everything from their personal stories of the actual condition, to the problems that we have had from health professionals, insurance companies, to the ways that we have received the best help, what we wish we (or others) had done differently, … the list seems pretty endless.

But the biggest news of all, is that for the first time in twenty years, the whole condition will be evaluated and turned on it’s head! EDS is such a rare, complicated and up until recently rarely understood condition that it has undergone many confusing changes as knowledge has grown world wide and the differences and similarities between patients have been studied and learnt and the different strains been classified and reclassified too many times to count, by different medical organisations, that different doctors around the globe were taught in different places under different classifications, and so they can’t even agree on many very basic elements of the condition.

But now, the Symposium will change all of that! From their web site:

“The primary goal is to reclassify the diagnostic criteria for all the types of Ehlers-Danlos syndrome. The symposium is also purposed with producing guidelines for medical professionals to use once a diagnosis has been reached as a universal guide for management.

….Updated diagnostic criteria, published in medical journals across the world, will increase and improve diagnosis, and the management guidelines will finally ensure that there is an internationally agreed-on treatment plan that doctors will be unable to ignore. Finally our community will have the foundations we need to ensure more research, funding and recognition.”

This is hugely exciting I think, as twenty years ago when EDS was last classified, it did not roll out world wide, and as EDS was considered so rare, most health professionals have either never heard of it, or even if they have, they know so little. Rheumatology was the area given the task of caring for EDS sufferers and they have failed miserably. Their worlds are filled with many conditions and diseases that they work incredibly hard on helping and researching and so on, but many have never seen a case of EDS and as there is no treatment, these patients have been consistently and systematically brushed under the carpet!

But the combination of the HUGE efforts of a handful of dedicated doctors of all kinds, the EDS support networks around the world, the way that the internet has connected everyone in such an incredible, instant, easy, and user friendly way, and the dedication, humility, hard work, and love of all who have come together to make the  EDS International Symposium a reality, is actually incredible. So many times in life we say “I wish someone would do something” but it is way harder than that for people to actually do anything and it requires sooo many “someones” that it is almost impossible. But here the impossible is actually happening! I am soooo excited!!