Tuesday, 29 September 2015

Making the Inivisible Visible

How many people do you know who have an invisible condition? If they don't tell you, how would you know? It's invisible.

So, could be many more than you realise.

Very many more.

We never know what goesver know what goes on behind a happy, smiling face.

People living with a physical or mental health problem which cannot be seen look fine. They look healthy. But in actual fact, they are living with something which may be quite horrendous. Something frightening. Something painful. Something which has a huge impact on their life. But....they look fine.

Their disability is already bad enough, without having to then deal with obstacles and prejudice.

The world needs to learn to see beyond disabilities. But it also needs to learn to see beyond the invisibility of some disabilities.

We never know what goes on behind closed doors. Likewise, we never know what goes on behind a happy, smiling face.

People with invisible disabilaties often get criticised when using disabled parking areas. "They shouldn't be using that space. Look at them. They look healthier than me!" But the truth is that they have been granted the disabled parking badge, because they have a disability. A doctor has signed off on it, and the person has paid for it. Looking fine doesn't mean being fine. They need that space close to where they are going for a reason. Do they need to have notes left on their cars saying they have no right to the space? Or strangers approaching them demanding they move their cars? No, but this is often the reality for the invisibly disabled. It is difficult enough dealing with the disability itself, without this added problem.

Another big issue is medication. Sometimes people are accused of being drug addicts. They are not. They do need to take regular medication to manage their condition. This is not a choice. Yet even pharmacists sometimes question the patient's prescription. 

Trigeminal Neuralgia and other facial pain conditions are just some of the many invisible conditions. People can be living with unbearable pain, but nothing can be seen. Not even by a doctor. 

We have created the following short video about Trigeminal Neuralgia, in the hope that it can possibly help bring some awareness about this extremely painful, but invisible, condition. 

Invisible illness week

This is invisible illness week (28th September - 4th October). End TN has joined with many other groups for other invisible conditions to try to get more awareness for the many conditions which cannot be seen.

We want to make the invisible visible.

We can make a difference, but we need your help.

Please share blog posts, videos and posters about invisible conditions, using the following hashtags when you post: #MyInvisibleFight #iiwk2015 #Invisibleillness along with the name of the condition which you or someone you know lives with.

Please help us make the invisible visible.

Friday, 26 June 2015

25 Things To Say To Someone With A Chronic Condition

We often see posts relating to what NOT to say to someone with a chronic condition. 

Here are a few suggestions of things which most people with a chronic condition would like to hear.

Obviously they won't cure the condition, but they can help the person.
  1. Is there anything I can do to help?
  2. I'm always here if you want to chat.
  3. Would you like me to take the kids this afternoon so you can rest?
  4. Do you feel up to a visit.....I'll bring dinner?
  5. Don't worry about housework. I'm here to see you.
  6. If you ever want some moral support for doctors visits, just ask and I will come along with you.
  7. We don't have to talk, I just want to keep you company.
  8. I’ve brought chocolate.
  9. I don't know exactly how you feel, but I can imagine it's horrible to deal with.
  10. Do you have any reading material about your condition, as I'd really like to learn a bit more so I can understand more.
  11. Is there anywhere you'd like to go...I can take you? I know you can't drive much these days.
  12. Remember that movie you wanted to see, but you weren't able to go to the cinema? I've got it on DVD. Would you like me to bring it round tonight?
  13. Write me a grocery list and I will go collect it for you.
  14. I know you’re on your own a lot....if you want some company, I can visit anytime.
  15. If you’re feeling down, I am a good listener.
  16. I remembered how much you loved my chocolate cake, so I made one for you this morning.
  17. When you have to cancel arrangements at the last minute, I'll understand.
  18. Would you like me to take your dog for some nice long walks? I know you're not up to doing that just now.
  19. What is it like for you, living with a chronic condition?
  20. Don't feel you need to pretend to me about how you are feeling. You're my friend.....so if you want to vent about it, I'm here to listen.
  21. I can't pretend to understand how you are feeling, but I do have empathy.
  22. I'll not be offended if you say you can't talk, you need to rest or that you're not in the mood for company.
  23. Try not to get stressed about Christmas, birthdays and other special events....I can help you. Please just ask.
  24. Call me. Call me any time you need me.
  25. I’ve brought more chocolate... 

Wednesday, 28 January 2015

How do you view your pain?

The way we view our pain can affect how we cope in our daily life. If we see pain as an enemy, we feel we have to constantly fight it and quickly forget that there are other ways of seeing our condition and our pain.
Alaskan TN patient, Jordan Riggs, writes about how she sees her pain and how this helps her cope.

The label "Medical Warrior"...and why it isn't appropriate for all patients with chronic illness

Imagine, for a moment, living in a household that is constantly simmering with strife. Interactions between yourself and the other occupant is adversarial at worst, and resentful at best. It's not a simple personality conflict that pervades the relationship: it's a chosen rivalry.  Every morning you wake up determined to be bigger, badder, and more determined than the enemy who, in the adjacent room, is also waking up.  The experience of constantly trying to dominate- and feeling like an utter failure when you're occasionally dominated in return- is mentally and emotionally exhausting.  The compulsion to exert control over your housemate was originally a coping mechanism for how their volatile behaviour negatively impacted your life.  However, that desire for control has since grown into a beast of bitterness and sensation of powerlessness.  Rather than listen or intuit what your antagonist requires for the two of you to live in harmony, you instead embrace- even promote- constant conflict.  You consciously perceive yourself as a willing aggressor, despite feeling drained from the constant sense of combat.

Now, take a moment to replace  the above scenario's "household" with "body".  That belligerent housemate- the one that constantly causes trouble when you're most vulnerable- is Trigeminal Neuralgia.  You're a patient who has adopted the label of "Medical Warrior".  As such, harmony with TN is not an option: it must be ignored, loathed, "put in its place".

But if you're always fighting your own body- physically, mentally, emotionally- is there ever really a winner?  Is putting life with a disruptive disease in the context of "Fight, fight, fight!" always the most beneficial option?  Unless you or the doctors create a potentially fatal situation, TN itself cannot kill you.  Continuing with the earlier theme of personifying this disease, TN is an incredibly annoying, but ultimately impotent buffoon who can drive you mad and cause untold amounts of grief- but it isn't a menacing assassin holding a gun to your head like a deadly disease can (and does).  Evaluating our journey with this disease through the lens of a self-proclaimed "warrior" can, if not kept in check, cause the distinction between emotional perception and actual reality to become blurred.  Ironically, by regularly maintaining a perspective of ourselves as a warrior, we also give more symbolic power to our disease: suddenly the TN goes from being a simple malfunction in our brain to a foe of epic proportions, one that we fool ourselves into thinking can somehow be defeated by aiming hostility at it.  A blood vessel won't spontaneously stop compressing a trigeminal nerve because a TN patient wakes up every morning with a battle cry of "I am a medical warrior!".  The often-overwhelming pain won't suddenly stop affecting every aspect of our lives because we try to be superior to, and dominant over, the disease.

Rather than pour precious energy into cultivating the mindset as a warrior, what if we instead sought to cooperate with TN?  What if all of that strength and courage it takes to maintain a combative attitude instead went into nurturing an accommodating relationship with the disease?  How much more fulfilling would our life be if we embraced a more balanced approach, choosing when to unleash our inner warrior when it serves us best (gearing up for an MVD, first consultation with a new neurologist, etc.), and extending graciousness and acceptance to our disease when everyday life is routine?  

For some, being a warrior is the only option.  For others, however, relating to their disease exclusively as a warrior can become more draining than the disease itself.  There are other ways to emotionally approach and psychologically manage chronic medical conditions like TN than to constantly be in conflict with it.  It can be challenging to push the tough, self-denying, "black-and-white" thinking of a warrior aside to be honest with oneself.  It can be even more difficult, initially, to make changes that self-honesty has indicated would be a healthy departure from what we- and others- expect of ourselves.  Any chosen path comes with its own inherent benefits and drawbacks, but only a patient can determine which path is right for them.

Wednesday, 19 November 2014


Dear Healthy Person,
Congratulations. You are worth 16 of me.
You can go to work eight hours a day, five days a week.
I can work half an hour a day. In three, ten minute bursts.

You sleep eight hours and wake refreshed.
I need to sleep ten to twelve hours.

You can go out for dinner, on to a concert, and back to someone's place after for nightcaps.
I can meet a friend for a quick coffee.

If you do more, push yourself to your limits, you get tired. You need an early night, or an afternoon nap to recover.
If I push myself, my body shuts down and refuses to move. My mind shuts down and refuses to think. I need a week of early nights and afternoon naps to recover.

Back when I was you, Healthy Person, I used to think tired meant a lie-in on a Sunday morning, after a busy week at work, and a hectic Saturday shopping and cheering the kids' on at weekend sports.  It meant a cup of tea, feet up and a snooze on the sofa at 4 o'clock, after a long weekend entertaining.  It meant feeling like the wheels are falling off because the baby was up again at 11pm, and 2am, and 4am, and you haven't had an unbroken night's sleep since she started teething. It meant aching joints after a day gardening, or cycling, or mountaineering, that a long soak in a hot bath and a good sleep would soon cure.

Now I am a different me. A me with a chronic auto-immune and pain condition, that can't be cured, and can barely be managed.  Part of the package is fatigue. And thanks to fatigue, I am a sixteenth of me.

This is what tired means now: getting out of bed and getting dressed; or having a shower and washing my hair; or reading for ten minutes; or emptying the dishwasher and putting the dishes away; or making coffee and breakfast. Four years ago I did all these things between getting up and going to work, as well as walking the dog, putting the rubbish out, making my lunch and putting a load of laundry on. In an hour and a half, I could achieve more, with no weariness, than I can now in a day and a half.

Fatigue doesn't mean I can't do anything.
But everything has to have downtime allocated. My day has to be measured out into short bursts of activity followed by long periods of rest or sleep.
If I have a shower in the morning, I rest an hour before doing the dishwasher.
If I spend an afternoon with my grandkids, I rest three days before meeting my best mate for coffee.
If I have a deadline for writing a short article, I start work on it at least a week before.
If I don't rest, my body does it for me. It collapses.

Sometimes I forget.  I wake up in the morning and I feel fresh, energetic. I jump out of bed, grab my clothes, head for the shower. I sing in the shower and plan my day; all the household tasks I need to catch up on. An afternoon at the park with the grandkids. Make dinner for friends. By the time I'm drying myself, I am so tired I barely know which way round my knickers go. 

This is the reality for people with chronic illnesses.
We are one-sixteenth of healthy people.
One sixteenth of the people we used to be.
One-sixteenth of the people we want to be.

So congratulations, dear healthy person. 
I'd hug you, but I don't have the energy.

Wednesday, 5 November 2014

Invisible Conditions

Trigeminal Neuralgia is an invisible condition.

One of the most difficult aspects of living with Trigeminal Neuralgia is that it cannot be seen by people. "Can someone really be in so much pain, but have no visible signs?”

Many people need evidence, something visible, something tangible, before they can truly believe that someone could possibly be living with such cruel and savage pain. After all, if it were really that bad, doctors would have found a cure by now. Wouldn’t they?

Sadly, it is that bad, and even more sadly, there really isn’t a cure.

When there is no understanding, it affects the patient so much.

They feel like they are not believed. They feel guilty because of their inability to live life as they should. They feel like failures, as they cannot live up to their own or other people’s expectations. They feel that they need to hide their pain from others. They feel more and more isolated with their pain. They become depressed. And it becomes even more difficult to deal with the pain.

This is not just related to Trigeminal Neuralgia.

There are many invisible conditions.

Can we tell if they have an invisible condition?

Can we tell if they are ill?

Can we tell if they are depressed?

Can we tell if they are grieving?

Can we tell if they are being bullied?

Can we tell if they are struggling financially?

Can we tell anything about a person simply by looking at their face?

Of course, we can’t tell any of those things just by looking at someone's face.

But we, as humans, tend to judge too readily.....even those of us who believe ourselves to be non-judgmental. We all do it.

We notice the grumpy looking shop assistant and think they could do with smiling a bit more. We don’t wonder why they are grumpy. We don’t really give a thought to what they may be going through. We possibly don’t even care.

We see a car pulling into the disabled parking space and notice the driver getting out and walking unaided into the supermarket and presume he isn’t disabled at all and shouldn’t be parking there. We don’t give a thought that by the time he has finished his shopping, he possibly will be struggling to walk from the checkout back to his car. We just think he was wrong to park in that disabled space.

We hear so much on television and newspapers about people fraudulently claiming disability benefits, that when our young, healthy looking neighbour hasn’t been working for six months, we presume they are lazy and work-shy. Do we even entertain the thought at all, that this healthy looking young man, may actually be suffering greatly in some way? Depression? Anxiety? Living with invisible pain like Trigeminal Neuralgia?

Perhaps we all need to take another look at those faces.

Perhaps we need to imagine a large question mark on their foreheads to remind ourselves that much of what goes on in life is actually invisible.

Nobody likes to be judged.

Perhaps a little more compassion and empathy could make everyone’s lives a little better. 

Please help to bring awareness about Trigeminal Neuralgia and other Invisible Conditions by sharing our blog. Awareness can bring much needed understanding.

Tuesday, 7 October 2014

Awareness Day

Awareness is so important

Without awareness nobody would know about so many dreadful illnesses and conditions. We wouldn’t know about troubles throughout the world, about starving nations, about war torn countries. Trigeminal Neuralgia is only one of many things which needs awareness and help.

Living with chronic facial pain like Trigeminal Neuralgia can be extremely isolating, exhausting and even frightening. There is so much more to living with the pain, than simply living with the pain. More needs to be done to help people. More understanding from doctors. More research needs to be carried out.

With awareness, hopefully we can achieve that.

We hope that one day, people will hear the words “Trigeminal Neuralgia” and immediately understand how much pain this condition causes. We, the sufferers, are really the only people capable of doing this.....and it can be done. By talking about our pain, by writing about it, by trying to get as much exposure as possible, we can help people understand.

If we say nothing, people will never understand.
If we say it is a migraine or earache because that is easier than explaining, people will never understand.
If we just give it that nickname of the Suicide Disease, people will still never understand.
The only way we can expect people to at least try to understand is for us to name it and explain it.

Awareness days are an excellent way to get more exposure, but in actual fact one day in the year is only a very small part of the awareness work which goes on.

We all need to work constantly, throughout the year to get more understanding. We need to work hand in hand with the official TN organizations. We need to ensure that any information we pass on is correct, easy to understand and it needs to reach the eyes and ears of not only TN sufferers, but their families, friends, colleagues and even medical personnel if at all possible.

With the internet, we have knowledge at our fingertips. Knowledge is power. The internet has made the world much smaller. Social media can play a huge role in awareness work. The ‘share’ button must have been invented for people trying to raise awareness.

People have often asked, ‘Why bother to share posts about TN? Does it really do any good?’ The answer is yes. To another person suffering, our posts help them feel less alone with their pain. The knowledge that another person knows exactly how they feel helps. Our posts also give them a way of explaining their pain. So if one more person understands this horrible condition, then it is definitely worth sharing the posts. However, we understand that not everyone feels able to share posts about their condition, and that is fine too.

Awareness posts about Trigeminal Neuralgia help people, but more than that, they also bring hope. We know there are no magic answers, but when we have hope, life is so much better.

For more information about the research being done, please take a look at the Facial Pain Research Foundation's website. 

Trigeminal Neuralgia can be difficult to explain. We have made posters and videos which can help do this. 

For more information and awareness material which can be shared, please visit the End TN page on Facebook. www.facebook.com/endTrigeminalNeuralgia