Ending Invalidation

It happened again, or should I say it’s still happening.  Last night, I was talking with a close family member about my seriously ill sibling.  I can hardly imagine the mental turmoil and pain my sibling is experiencing, and I feel terribly for their suffering.  We spoke about the latest test results, how fatiguing the treatments are, and how strong they are to continue working during this illness.  I admire my sibling and hope they can recover quickly and thoroughly, to resume a healthy life.  

What happened during this conversation that has been lingering in the back of my mind since last night?  It is the starkly different approach to the invisible illnesses myself and my children have been fighting for years now.  I try not to bring up our health struggles, but in a moment of weakness and a longing to talk to another adult about a recent health concern with my youngest child, I did.

I was met with negative comments about my need to continually take my children to doctors, how the test results don’t mean anything,  and I should just tell my children to tough it out.  My children all have post-traumatic stress disorder (PTSD) as a result of repeated childhood trauma and exposure to domestic violence.  They struggle with depression, anxiety, and low self-esteem.  Asthma, chronic pain, and chronic migraine add to the already devastating diagnoses. 

They see a therapist weekly, have annual checkups with the doctor, and get their flu shots.  Also, there are urgent care visits for severe colds that aggravate asthma, in-office procedures to combat chronic pain, and those that attempt to prevent more migraines, as well as hospitalizations for depressive episodes and suicidal ideation. Do they see the doctor more often than the average kid?  Yes, they do – because they need medical care for conditions that are not visible to most people.

At the end of the conversation last night, I had a familiar, unsettling feeling.  When I was a child, I had several health struggles.  Some of them presented with obvious physical symptoms and were, in time, treated.  What I remember most about my health struggles as a child was being told that what I felt was imaginary, not real and that I was causing it to happen. 

Traveling in a car with me as a child was awful because of my severe motion sickness.  This was no secret, but I was always told that I was making myself sick.  For the life of me, I can’t imagine why I’d do that.  Vomiting in a car is no way to make friends, positively influence people,  or have any fun.  Eventually, that motion sickness turned into episodic migraines, but I was still bombarded with messages that I must be doing something to make myself sick.

As an adult, and in part because of an abusive, decade long marriage, the migraines became chronic.  After a vicious divorce and financially devastating child custody battle, the migraines only got worse.  Eventually, I was put on extended medical leave, but not after making significant and repeated mistakes at work because of my stubbornness to work regardless of my medical condition.  After all, I should be able to push through and stop making myself sick, right?  I eventually lost my job and have been fighting to regain my health and financial security for years now.

I don’t talk about my personal struggles with family anymore because I don’t think anyone wants to hear about it, and I certainly don’t need the negativity. I have a chronic neurological condition. It is real and invisible.  It has nasty leaches called depression and anxiety that drain me of any migraine-free days I might have.  I do not wish this on anyone, yet I have a child with chronic migraine.  I feel guilty and responsible for my illnesses and those of my children, even though I know I did not cause them.

Yes, I take my children and myself to the doctor to receive timely, appropriate medical care.  We also get up every day and push our way through and jump over (or crawl under) the hurdles life throws at us.  None of us have a potentially terminal diagnosis, like my sibling, but our lives are severely impacted by our invisible illnesses.  We didn’t cause them, and we don’t make them happen.  In fact, we are doing everything we can to get better, whether anyone believes it or not. 

The invalidation that happened to me as a child is still happening to me as an adult.  The stigma of invisible illness is alive and well in my family, but it ends here.  I will be the last of my family to be invalidated by loved ones about how I feel. My children will not be blamed for their illnesses, and they will be given the help they need to recover, so it doesn’t happen again.

Moon Love

Captivating

The soul that can speak through the eyes can also kiss with a gaze.
Quote by Gustavo Adolfo Becquer

Beautiful Blue Eyes Male

Those Eyes

Eyes are a window into the soul. The narcissist’s eyes are cold and masked with a forced sparkle until they rage with all the darkness of a black hole. I find myself avoiding eye contact, for the most part, as a defense mechanism. If I am in a situation where I must interact with strangers, I make it short and sweet with no opportunity for fostering a relationship of any kind. Shielding myself in this way creates a little bubble of safety around me, which I am all too comfortable with.

Then there are those eyes whose gaze I struggle to tear myself away from. I’m drawn to large, light-colored eyes and find myself searching them for truth. Eyes that hold nothing back and open to reveal authenticity, honesty, and beauty are irresistible to me. Combine those eyes with a gentle but confident nature, and I’m in hook, line, and sinker. Your eyes haunt me like a full moon on a warm summer night.

Volunteer for the 2020 Migraine World Summit

A few years ago, I volunteered for the Migraine World Summit, and I’ve never looked back.

During a time when I was just beginning to climb out of a decade long chronic migraine cellar, I saw a call for volunteers on a migraine website I follow. At the time, I was unemployed and in the middle of an unplanned career change. I figured volunteering would give me some much-needed experience to help me find a job in my new career field. Looking back on that time, I had no idea how valuable this experience would be for me.

Yes, I now have some career-related experience under my belt, but I also have so much more than that. At Migraine World Summit, I am embraced by those who not only understand, believe, and support my chronic migraine journey but also value me for my strengths. On top of all that, I learned much more about migraine than I ever thought possible, and I continue to learn. Add in the feel-good vibes from helping get important information to other people with migraine, and it is a win-win situation.

In preparation for the 2020 summit, the Migraine World Summit is looking for volunteers in multiple roles including:

  • Social Media Manager
  • Community Support Ambassador
  • Content Editor
  • Copywriter
  • Website Developer
  • Graphic Designer
  • Partnership Manager
  • Live Event Planner
  • Video Editor
  • Executive Assistant

If you are interested, just fill out a short application form before November 1st, 2019. You can also visit the Join Our Team tab on the Migraine World Summit web page for more information.

Escape to Slumber

Woman sleeping in bed


Escape to slumber in the darkest night.
Heavy blankets help hide the fear inside.
Moonlight hidden behind thick clouds, contrite.
Their eyes weighed heavy, blurry with bromide.
 
Racing in circles, their thoughts fight and flight.
Replaying the past, like a movie slide.
Still frames, close-ups, emotions amplified.
Escape to slumber in the darkest night.
 
The movie plays on all covered in blight.
Each character struggling to face what died.
She covered them up and tucked them in tight.
Heavy blankets help hide the fear inside.
 
They woke in the morning and grinned, bright-eyed.
But then he broke in and unleashed his might.
She fought to save them and keep them bright-eyed.
Moonlight hidden behind thick clouds, contrite.
 
She schemed and planned and plotted for their flight.
He screamed and yelled and cursed them.  Amplified
by triggers and flashbacks that play despite
their eyes weighed heavy, blurry with bromide.
 
Safe now from him the future should be bright,
but his ghost invades. A demon bestride.
We carry him with us into twilight.
Never without the dead feeling inside.
                     
Escape to slumber.

Loss and Found Treasures

Loss and Found Treasures 

Chronic illness took away my health, my income, and my security. It also forced me to focus on my family – something I took for granted when I was healthy. After losing so much, I now realize that I have so much more of what matters. I have my loved ones, and I cherish them.  They are a treasure worth more than wellness, fortune, or invulnerability.

Struggling or Failing?

Life is a struggle from the very beginning. We fight for our first breath upon leaving the womb and cry when we succeed. We exert significant effort learning to walk and many times encounter pain before we triumph over balance. The struggles we face build our strength to overcome the next challenge. Struggling is not failing because it allows us to make our way through life.

The 2019 Migraine World Summit

The 2019 Migraine World Summit

Claim your FREE ticket now at The 2019 Migraine World Summit

The largest patient event in the world for headache returns this March 20-28.

The Migraine World Summit will bring together 32 experts including doctors and specialists to share new treatments, research, and strategies to help you improve your migraine and chronic headache.

WHY ATTEND?

  • World-Leading Experts: At the Migraine World Summit, you’ll learn first-hand from 32 of the world’s top migraine and headache experts from leading institutions including the Mayo Clinic, Harvard Medical School, John Hopkins Hospital, Stanford Medical, John Hopkins Hospital, and the International Headache Society.
  • Full Access: Many of these world-leading experts have long waiting lists and fees that are beyond the affordability of the average insurance policy. Skip the waiting period and get straight into the room with these experts.
  • Free: The event is entirely free whilst live from April 18-26. Visiting dozens of specialists in one field would take years and costs thousands of dollars. This is an incredible opportunity to hear from dozens of leading experts in migraine for free during the week. After April 26 transcripts and interview copies are available to order.

Claim your FREE ticket now at The 2019 Migraine World Summit

Join more than 100,000 informed attendees and tune in to 32 NEW interviews to find the answers you need to help better manage migraine and chronic headache. Questions answered include:

  • What new treatments are available or coming soon?
  • What can I learn from successful patient case studies?
  • What new non-medicinal alternatives are recently available?
  • How can I break refractory chronic migraine?
  • When I should get a scan for my headache condition?
  • How are neck pain and migraine related?
  • How important are sleep and exercise really for those with migraine?
  • Are supplements or vitamins worth considering?
  • What are some common drug interactions and side effects we should know about?
  • How do I need to know about hemiplegic and vestibular migraine?
  • How important is diet for migraine and headache?
  • How can I interpret migraine research?

The virtual Migraine World Summit is free from March 20-28, 2019.

Register now for your complimentary pass.

Claim your FREE ticket now at The 2019 Migraine World Summit

See you at the Summit!

Break in the Fog

When the brume clears, no matter how brief the reprieve, capture the moment.  Hold it dear and remember there will always be another break in the fog. ~Undeniably Sara

When the brume clears, no matter how brief the reprieve, capture the moment. Hold it dear and remember there will always be another break in the fog. ~Undeniably Sara