*A Conversation from the Front Lines

There are times when a Listserv member writes the perfect thing, producing a post which is simply too good to let slide into obscurity. This is one of those posts;  

Hi “A”,

Many of us are on this path – You are at the place signposted, ‘Anger and Frustration’, which is near ‘Death to these Idiots’, but if you keep moving forward and don’t linger too long, you will find the other places, ‘I suppose I can see where they are coming from’ and ‘I’m in this for the long haul’. 

There is a particularly nice place to stop on the way, though it is easy to get lost and miss it, called, ‘Actually I am doing ok all things considered’ and ‘I may never get to the bottom of this, but I will keep moving forward’.

Joking aside, we have all been there, coming away from an appointment sad, angry to the point of bursting, confused…feeling abandoned and with a sense of ‘what was the point of that?’

I too have no identified genetic mutation. I am treated for PP and empirically the meds work for me. My daughter has now had a positive CMAP, so each time there is a little more news from my end, they perk up a bit more. I have had two positive CMAPs, but without that magic genetic code, they are still scratching their chins and going hmmm. Before genetics was possible, the CMAP would have been enough.

I too used to feel that this lack of definitive diagnosis was a slur on my character – ‘What – you don’t believe me?’

But I see it differently now. They don’t know *so much* about these types of disorders. New things are being realised every day. Often symptoms don’t fit a *known* expression of an illness now, but I think they accept that in the future there will be an explanation. But they can only work with what they know right now.

Stay calm at appointments, explain you need help for whatever it is that you may have. Don’t be hung up on receiving the diagnosis you think applies. It may well be you are wrong, and their skepticism will point to them finding the right one. Prof __________ had an idea about something as I talked to him, and I found that he had run some copper tests. Something I said had made him wonder. And if it turned out I had a copper neuropathy, I wouldn’t be mad at him for deciding I didn’t have PP. He is also looking at gene sequencing for familial hemiplegic migraine.

But he treats me for PP. He wants to be sure, in the absence of a known mutation, and in the meantime, looks for anything else he *can* look for, to be sure he hasn’t missed something else.

I still feel frustrated – I want to *know* by their gold standard what this thing is. But it makes no difference if I know or not. I still have to take care of it daily. We are helping them unravel things. That doesn’t always leave us feeling all warm and fuzzy and cared for, because this is difficult stuff.

There is a fabulous paper by Prof Dimitri Kullmann at the Instiute of Neurology in London. Every time I feel down, I read it. In it he frankly confesses how much they don’t yet know about channelopathies. I will try to locate it and post it. Read it here:

The point is – a refusal to confirm a diagnosis is no stain on you. They are not sure, but doesn’t mean they can’t help. How we come across to them makes a lot of difference in how they listen unfortunately. I have honed my consultation skills over the years and I do it a lot differently now. It is hard to be dispassionate and detached, but they can’t deal with a patient who is emotional, angry or going off at a tangent – I used to do all of that!

Let your anger out, but don’t let it stay. It is too detrimental to us. Better to use the energy to understand more about these disorders, so we can be on the same page with them.

“B”   originally posted 08/06/2011    

Stories We Tell are e-mail exchanges written by our List members. In this exchange patients discuss the difficulties of see-sawing between between looking fine and lying in a heap somewhere, not always in the place of our own choosing.

Imagine walking a 2 x 4 plank spanning the open space between two adjacent buildings. As long as you are able to stay in perfect balance, you and gravity get along just fine, everything is normal. Let a gust of wind strike you, or should the plank crack, and you quickly discover gravity is a force over which you have no control.

But you look so normal…

Hi All,

I’ve just come back from a few days break. Hope this finds you all reasonably well and optimistic! Reading the past week’s posts has made me realize that we have real issues with people who do not have a rare disorder. People do not understand because most of the time we appear “normal”.

Our families, friends, work colleagues and acquaintances  may not quite grasp that when our fine balance “tips”, our bodies react. These are nice, fair (most of the time), good people, but the attitude can be, “Hang on, you’re “normal”…. aren’t you?”

If we were permanently in a wheel chair, had terrible scarring, or were missing an arm (something people can see) then they could understand. The fact that we look normal makes it difficult.

There was a notice in one of our car parks recently which read, “Please remember, there are people with disabilities which are not visible that are also eligible for a parking badge.”

I came across something really odd when I was being assessed for disability living allowance by a panel. The person who gave me a hard time was not the doctor but a wheelchair user. Because I can get around reasonably well, she couldn’t understand that my condition is limiting. I have little warning of a weak spell or stiff spell, but she had no sympathy or understanding of the limitations the unpredictability of my attacks impose. I am so lucky to be surrounded by people, who generally, take me on whatever basis, but they still do not fully understand. So let’s celebrate us, this group, cause we are in it together.

Love and blessing, “A”

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Hi “A”

Hope you had a good break! I really enjoyed reading this from you, and it put to a fine point the dilemma people face with us. They want to believe in us, but we wax and wane too much and so we don’t tick the usual boxes. 

“There was a notice in one of our car parks recently…” I thought this was a great idea! I haven’t seen such a notice myself, and wish there were more of them. You do feel eyes on you when you seem to walk away looking unhindered by disability.

Depending on my mood I either eye them right back and dare them to say something, or alight with my stick, even if I am walking fairly well at that moment. Recently I parked my car at the supermarket in the blue badge spots. I knew I had a full shop to get, and would be worse for wear when I had finished. A man saw me reverse into the space, and stopped going about his business, stood in front of me with his arms folded and watched me as I parked and got out. When he saw my stick, he nodded a gruff acknowledgement and went on his way!

I was outraged! I might look ok at that moment, but that trip I actually had to leave my car there and get a taxi home as I wasn’t able to drive when I had finished shopping. He wasn’t there to see that, naturally! I also drive a big car, and look too young to have a blue badge possibly (not that it has anything to do with age), and that was a combination this chap obviously didn’t like.

Today I sat in a Tribunal. We were given the most uncomfortable seats and within a short space of time I was stiffening to the point I knew I would not be able to walk. I took the only thing available to give me more comfort – a teddy bear left by a visitor – and stuffed it under my hip and back. And so I continued a legal and solemn process, whilst sitting on a teddy bear.

I had parked on the main carpark but boy! I wished my car was outside the main door when I had finished! So there was an example of me walking nicely into work, and crawling out like a crushed beetle an hour later, just because I had the wrong chair. I will ‘pay’ for that all day at least.

One of my colleagues who I haven’t worked with before couldn’t understand it, another who knows was more sympathetic, and the administrator thought I was making a fuss. But they don’t live in my skin, and nothing I did put them out in any way. But it *isn’t* fair – my new colleague thinks I am weird, the admin think I am soft. But the chap who knew helped me out and back to my car, carrying my briefcase.

Every day with an invisible condition will bring moments like this. Yesterday my neighbours saw me with my bike. Today I can’t walk to the bins. They have to get on with whatever they think. As long as I don’t judge others, I have to have compassion for *their* lack of understanding. And educate them wherever possible!

“B” 

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Hi All,

I think it’s hard sometimes for people to even imagine our disorder, since when we’re out and about we look so “normal.” I’ve found myself going back and forth at different times between actually trying to appear like that “normal” person who is self-sufficient and the true person that I am, the one that needs a hand.

It turns out that the first version of trying to always appear normal doesn’t work for me in real life. I have some funny stories. Since my episodes can sometimes come on fast, I’ve taken paralysis falls in public where my first whispered words to those concerned people bending over me were; “Where did my skirt end up?”

So now I opt to tell folks I’m interacting with for any length of time that I have weakness and paralysis episodes on a daily basis, what they look like and what I do for them. I figure the more the public is educated the better off we all are, and you never know who they know (as in … I have this friend who has spells like that).

As to the parking, I don’t drive so my husband is with me. He calls it rock star parking since we get to park close. If anyone questions us he looks at them directly and says in a strong and scary voice, “You don’t want what she has.” It gives them something to think about. HAH!

“C”

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You chaps from the States have the right idea regarding educating people’s attitude to disability – However, in the UK we are ‘generally’ not forceful enough. For example, when able bodied, non blue-badge owning individuals swerve into a disabled persons parking space at the supermarket and then run in to the supermarket – I just want to torch their car – calmly.

I always use a walking stick outside the home, unless I’m having a bad day and in a wheelchair and C’s husband’s phrase made me chuckle.

“D”

“D” said, “When able-bodied, non blue-badge owning individuals swerve into a disabled person’s parking space at the supermarket and then runs in to the supermarket – I just want to torch their car – calmly.” 

I would add insult to injury and roast a hot dog in the flames whilst I was watching…. I have a particular attitude to the attitude of drivers who think they can use the blue badge spot because it is nearest the cash machine at the shop. I have in the past draped myself decoratively over the bonnet of a van parked for just such a task.

I know it didn’t belong to a disabled person, as there was a set of ladders on the roof. I calmly said to the driver that I was interested in knowing how he used those *from his wheelchair*… It sparked a nice big public row where he tried to belittle me, and he embarrassed himself. He came off worst. The bugbear was that there was lots of parking he could have used – and there was only one blue badge spot. 

I have parked directly behind a car using that spot without displaying a badge before, and when a manager has been annoyed, I pointed out that I will be out when I am good and ready, and that if the driver thinks it is ‘quicker’ to park there, they’ll think again next time. But then, I am *such* a troublemaker…..grin

“B”

I am so proud of us and all we have achieved despite a lack of understanding medically or from the general public. We all have seen attitudes to mental illness and other social biases so we shouldn’t be surprised, but when you are the patient, or a family member or friend, you understand – you battle on and educate as many people as possible – make a difference!