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.