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 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 but I didn’t know that they 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.

And when I think with my head I know that for the most part, they are right. But 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 clear, 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.

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Where you can find and follow Jennifer:

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@JPeaSmith
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Meet Chrisjan, Guest post…

Today we have a guest post from Helene, who has so generously sent me her own story with EDS, and I decided that as she clearly written it from her heart and share’d so honestly, I will leave it in her own words and let her speak. For me, it is a huge reminder that life happens to all of us and that chronic illness gives no one a “get-out-of-jail-free” card from the rest of life’s challenges. In other words, you don’t get a chronic illness instead of other things, you get it as well.
Here she is will her gorgeous son Chrisjan:

Screen Shot 2017-05-30 at 5.10.49 PM“Good Afternoon, I am Helene and my son is Chrisjan and he is 13 and has been diagnosed with Hypermobile Ehlers-Danlos Syndrome or hEDS.

I have two children, my daughter is 15 and a wonderful child. Straight A’s in school since grade one. Chrisjan has been a bit difficult. Both my children were prem babies, my daughter at 33 weeks and son at 36 weeks, due to an incompetent cervix and cervical cancer. In 2009 their father passed away from White Matter Disease (early onset Alzheimers).
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We moved to Durban so I could work and have my children taken care of. In early 2011 Chrisjan showed signs of ADHD and we had him assessed and it was confirmed. He is on medication for ADHD and depression as well as Sleep Disorder. In 2015 just after I remarried I had to stop working as Chrisjan struggled a lot with eating and muscle wastage. Due to not having medical aid, we turned to the government hospitals for help where they did all the tests you could think of, from MRI to EEG, ECG to numerous blood tests, and we found out November 2016 he has EDS.
He has been stopped from playing all sport in 2015 already and he loves his sport so much. In October 2016 my husband had a seizure and was paralysed on his left side. He lost his work due to it, at least he can walk now but He has a heart condition which is still under investigation and has been diagnosed with Functional Neurological Disorder. I have been looking for work but it has not been easy.
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Chrisjan also has a small heart (equivalent to a 7-year-old) and struggles some days in simple tasks. He has twice hurt himself where he needed stitches, once in his index finger (for this he had to undergo anaesthetic) and once he cut his left palm.
Amidst all that, my son is a happy and content child. We have now started investigating into why he is unable to eat properly and is severely underweight. He only weighs 30 kg. He walks around with a bit of difficulty, his left knee is aching a lot as they said the cushion is worn through.  His right ring finger is in a bent position, and he cannot straighten it which causes problems when he writes. His right shoulder blade in severely malformed and it is shorter than the left. I am at the point where I do not allow him to walk without a T-shirt as I cannot bear looking at him and counting all his protruding bones.
He is brave as he seldom asks for painkillers, only when he has a migraine. Puberty has not hit him yet which is what I am afraid of in the near future.
And that is our story on a short end. “
Thanks Helene so much for your story!

img_3636If you would like me to share your story with any chronic illness please email me on: JPeaSmith@KingsRoadChronicles.com

Where you can find and follow Jennifer: 

@JPeaSmith

Running on Empty!

Facebook Live Front A1-3

Facebook Live. I’m lovin’ it. I started a couple of days ago with the testing which was awkward and weird but I am finding my space there slowly, and really enjoying it. I asked for questions for the next few weeks of “shows” and as I been asked a lot of questions before, through my blog and Facebook stories, as well as my Mighty Stories, I suddenly have quite a long list to keep me going for a while.

I want to do this well, so I spent a few days mulling over the list of questions and today we realised that most of the questions fall under one of four categories which are not surprisingly, quite relevant to anyone, even those without a chronic illness at all. People who could benefit from these Q&A sessions will be those who are struggling (or who know someone struggling) with a difficult season in their lives. This will include those dealing with bad health, grief, loss, or any other life change such as divorce or moving far away.

Once every two weeks, I will be doing a Facebook Live under the heading of “RUNNING ON EMPTY”. Topics for discussion will cover general topics like managing medications, getting help from those around you, negotiating specialists, and understanding your life changes. But May just happens to be EDS Awareness Month so the sessions in May will include (but be limited to) things like “What is EDS?”, “A Day in My Life”, “An EDS First Aid Kit” and so on.

Here is the schedule for the next few months ( I will update it regularly with new links and updated information as we go!) :

  • Monday, May 1st – I will be focusing on EDS because May is EDS Awareness Month and what a better way to start than that!  | New York: 2pm | London: 7pm | Johannesburg: 8pm |Sydney 4am |

 

  • Thursday, May 18th – “A Day in My Life”| New York: 5am | London: 10am | Johannesburg: 11am |Sydney 7pm |

 

  • Monday, May 29th – | New York: 3pm | London: 8pm | Johannesburg: 9pm |Sydney 4am |

 

  • Thursday, June 15th – | New York: 5am | London: 10am | Johannesburg: 11am |Sydney 7pm |

 

  • Monday, June 26th – | New York: 3pm | London: 8pm | Johannesburg: 9pm |Sydney 4am |

 

  • Thursday, July 13th – | New York: 5am | London: 10am | Johannesburg: 11am |Sydney 7pm |

 

  • Monday, July 24th – | New York: 3pm | London: 8pm | Johannesburg: 9pm |Sydney 4am |

 

  • Thursday, August 10th – | New York: 5am | London: 10am | Johannesburg: 11am |Sydney 7pm |

 

  • Monday, August 21st – | New York: 3pm | London: 8pm | Johannesburg: 9pm |Sydney 4am |

 

So pop those in your diaries or go HERE to watch this short introductory Facebook Live. At the very end, it will give you the opportunity to turn on notifications for my future Facebook Lives. You can also simply “Like” and Follow my Facebook Page and the following places to get updates and changes. Please remember to share any of my Posts across my social media platforms.

@JPeaSmith
 
“Here she comes, running, out of prison and off the pedestal: chains off, crown off, halo off, just a live woman.”  ― Charlotte Perkins Gilman

How to Be Nice?

After all this time, I still don’t know how to be firm enough and nice enough at the same time, when people give me advice about my condition that is factually incorrect. Someone once said to me that I should just nod and listen but then just let it brush off me.

But they don’t get that if I did that, there are a number of problems. The first is that it happens to me ALL.THE.TIME. I spend very limited hours a week with people and so to encounter one of these almost every single time is not only tedious and boring but it is a terrible waste of my precious energy.

Secondly, and this is even more important is that people are kind and loving and they want to help me. So they follow up. They want to know if it worked.. what I thought.. and often they simply want affirmation that their idea is so wonderful. Their motives are sooo good, that they invest in the outcome.

So what do I do then … lie? Nope! Pretend? Nope? But when I tell them the truth they don’t listen. When I tell them that I’ve already tried it or the theory behind it does not apply to what I have or that I am already trialing other things and can’t interfere with the process, they brush me aside.

If I had a broken leg, drinking a cocktail made from broken legs will NOT fix it.

What a stupid analogy they say. But my collagen (each and every collagen cell in my body) is broken (has a piece missing) so drinking collagen will not change that! And I don’t have the heart to tell them that their suggestion is no less silly than that.

My body is not fighting itself, it isn’t riddled with disease, it isn’t toxic or imbalanced or too acidic or alkaline. It’s just missing a little bit. Lots of little bits. Lots and lots and lots of very little bits.

And neither teas nor powders nor pills nor potions can replace them. But how do I tell people that?

Where Jennifer hangs out: Blog | The Mighty | Facebook | Twitter | Pinterest | Goodreads | Amazon

@JPeaSmith
“Here she comes, running, out of prison and off the pedestal: chains off, crown off, halo off, just a live woman.”  ― Charlotte Perkins Gilman

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

Illness Envy.

img_8774-1It has taken me six months to feel brave enough to write this post! Seriously… every time I go to write it I think that people will tell me that I am imagining things, that no one does this, and so I pack it away and close my mouth. Then it happens again and I pull out this draft and start writing…. and then the same doubts push me to pack it away again.

But the simple truth is that time and again, I see it happening here, there and everywhere. it happens to me personally, it happens to people I know, and I see it on posts all over social media… It doesn’t have this name, and I am not sure that people know how to talk about it or what to do about it. So they skate over it and then leave it. No one wants to stand up and say: you know what, that comment wasn’t ok. That comment is simply illness envy!

So what is illness envy I hear you ask? It is that time when someone in the room asks me how I am going, or if I am having a good or a bad week. And someone else in the room pipes up (before I can answer) and says that it is all in my head, or I must just keep my chin up, or some other flippant comment, followed by them turning the attention to themselves and their own journey with pain. It comes across, whether they like it or not, as though they are envious of me and my illness. They appear to have a need to trump mine, or to squash mine, or to make out that they are worse.

And I am sorry people, but I don’t know how to respond or stop it, but it simply isn’t OK.

I know what it is like to be in pain for a seriously long time and not have anyone notice, I get that! And I get that when someone else gets attention for it then it is easy to feel invisible. But do they not know that what they are doing does not make other people have any sympathy or empathy for you when you do it. The attention showed to me in that moment (which might be the only “attention” that I have had in ages) is not going to go to you just because you steal it.

Hence begins a series on “envy” …

(Have you experienced this? On any side of the story? As the person who got trumped or as the person trying to give empathy to someone but a third party trumped your enquiry? Or are you the person who has this envy and can explain what is happening?) … I would love to hear from any of you!

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

 

Finding my identity.

img_2713Over and again I hear people who are hurting cry out that they don’t want their brokenness (whether body or soul) to define them. There are other parts of them which they want people to see first, and sometimes only see those other parts. I get that. I hear that. And for the most part, I agree with that.

But then I also see some people for whom their pain is a good chunk of who they are, and they choose to allow that to be what their identity is. (note the difference there: they did not choose their illness, their abuse, their brokenness or their pain, but they do allow it to be a huge part of their identity). Who are these people I hear you ask? They are some of the advocates for change, the voices who speak up, the trailblazers and the writers and the teachers and the people who allow the spotlight to be placed on them so that life can potentially be better for others. I applaud these people too. I don’t want them and all that they do to get lost in the cry to be seen as “normal” by everyone else.

I am a writer and I want to be seen as a writer in my own right. I don’t want to be the-disabled-lady-who-writes. I want to be the writer who some people eventually find out is disabled. Which I am not sure is a reality because I write about my life and my life is broken, in both body and soul. And I want to be a voice and an advocate and a trailblazer… and that puts me, and my photo and my stories out there. I am not sure that I get the privilege of deciding what hat I get to wear and when. But I want to embrace it all. If anyone treats me badly because I am disabled, or talks down to me or trivializes me then they need a slap regardless of whether my disability is a small part of me or a massive part of me.

The truth is, writer, disabled person, broken person, survivor … they are all part of me, and whether I like it or not, I need to wear all those hats in order for people to see ALL of me. And that is the important thing for me … ALL of me!

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