How Battling TN Cost Me Friendships

" A friend loves at all times, and a brother is born for adversity."  Proverbs 17:17

 This post is not meant to shame anyone, to gain self-pity, or hurt any of the people in my life.  On the contrary, I hope that this will help to enlighten others in Your support circles and help you to feel less alone if losing friendships has already become part of your story.  I wish that I had been able to find other people who had already walked where I was walking who could have encouraged me and kept me from so many years of loneliness and rejection.  My diagnosis came before I had a smart phone or Facebook and online support groups.  What a blessing to be able to get online and instantly find others who are experiencing similar physical symptoms, life changes, and even emotional wounds that can relate to you!  If you are living with Trigeminal Neuralgia you may be starting to realize that unless you have lived it, you just don't Get how debilitating pain of this degree is.  Prior to my onset of TN, I actually had no idea that such horrific pain could exist that medication or a trip to the ER could not prevent or put out its flare.  My only thing relatable was my previous experience with periodic migraines.  A shot of medication would graciously knock me out and the next day the headache would be easing off.  So, I understood when a friend or loved one would ask why I didn't go to the ER and get a shot if it was that bad.  I had already discovered that rarely did I receive help at the ER until I learned What type of medication to ask for and if the physician on call would administer it.  I am sharing this today to say; most people will not get it when they hear you saying over and over that you have to cancel plans or appointments because you are in too much pain.  Once or twice, they will accept and hope that you feel better.  However, when you text them the next day to say, "I'm sorry I can't make it today," you might find yourself on their "unfriend" list.  

They Can't Get It !

Most of us cannot cmprehend how someone is suddenly in pain all the time and can't find a solution.  It is not just true with friends and coworkers, but even with famiy members.  

Then comes the joy of social media!  Suddenly when we finally had the opportunity to get out and do something fun, we may find our outing was posted to Facebook.  Then when I have to cancel plans with another friend once again, I have been told, "funny how you could do that with them last week, but you are always too sick for Me!"  How do we respond to that?  SHOULD we Have to justify ourselves? 

Educate

It does seem like people who love us should understand.  but the truth is that they truly cannot comprehend what we are talking about.  So yes, in a sense, we need to educate them.  Part of why I wanted to start this blog was to do just that.  If I can help make someone else's journey with TN easier and help save their relationships, it will be worth it.  

I can remember an example of a time when I was struggling to find medication or treatment to relieve the electrifying pain that would not end.  I had far more bad days than good days.  A good friend had asked if I could have lunch with her the next day.  That morning I woke up with "an ice pick in my jaw!"  When that happens, it is usually set in for days and nothing will ease it.  I texted my friend that there was no way that I could drive int the pain that I was in.  She replied, 'That's ok.  I figured you would cancel again, so I already planned to meet someone else."  I was stunned by her response and emotionally broken.  My text did Not say that I did not want to see her or that I could not eat.  How I wished that she had responded instead by offering to come to me and bring lunch.  This was not an isolated incidence.  It happened in similar ways multiple times with different people.  They assumed that if I truly wanted to be there I could orchestrate my day and medications in such a way that I could keep our commitments.  They have no idea how heart breaking it is for us to Have to cancel and to be stuck at home on the sofa with an ice pack alone.  They have no idea how isolating living with such a debilitating disease is.  If we Ever needed our friends, it is in these times.  

A similar occurrence happened multiple times with another close friend.  she had told me that she would give me one more chance to meet her one afternoon.  I know, what a strange thing for a Friend to say.  As my pain continued to increase, I struggle to get ready.  My hands were shaking as is common when my pain escalates.  My inner voice was telling me that this was not a good idea and really not safe for me to be driving.  However, I feared the rejection of one more friend, so I pressed on.  As I was starting my car, my adult son walked up to my window.   He asked where I was going.   I told him to meet a friend.  He reached around me and took out the keys.  As he did so, he said, "NO! You are not going anywhere!  I can see you shaking and sweat dripping off of you tells me that you are in the middle of a horrible attack.  It is not safe for you to be driving or going anywhere!"  

I burst into tears.  Part of me was so thankful that someone could SEE how badly I was hurting and cared enough to help me out of the dangerous situation.  However, I knew my friend would not understand.  As I expressed my thoughts to my son, he replied, "Well, then she is not a Real friend if she doesn't understand."  as suspected, she did Not.  She replied with frustration and anger at my last-minute notification.  I had to make a decision to prioritize my health and also the safety of other on the road.  As these scenarios became more common, I had to let some of these relationships go.  

Proverbs 17:17 

A friend loves at all times and a brother is born for adversity.

I am thankful to be able to say that some of these friends have since reached out and shared their remorse in not comprehending what my battle with TN was like and how I had no control over my ability to keep plans.  I've been able to share with them my hurt and loss during those seasons and we have all learned from them.  I hope that you can share my blog with your loved ones to help them understand that having to often cancel plans on them is not a choice you want to make.  Just because you can't go and do with them like before does not mean that you don't value time with them.  Ask them if they can bring lunch to you or come visit on another day when you are able to talk.  If they still don't understand, then let them go.  God will be faithful to bring other people into your life.  He has brought different friends to me that were sometimes just for a season.  If he removes someone from your life it may be just for a season as well.  

 

Even though my adult children and my mother have seen me at the worst possible pain thresholds, and seen my cry in despair at canceled plans, they will still be disappointed when I tell them I am unable to make it to an event because I am in too much pain.  It is not that they believe me or don't understand.  They are simply disappointed and will miss my presence.  It is just as frustrating to them as it is to us.  They are human and will sometimes let their emotions fly before they have the chance to think.   I have had to hear the hurt in a daughters' voice when I had to say that I couldn't attend her baby shower!  I've seen my mom pleading with me to try to make it to a family event.  As a mother and a daughter and a friend, these missed events are even more devastating to me than them.  

So, should we Have to defend ourselves or explain Why we could go do this thing with someone last week, but we cannot do this thing with another person this week? Truthfully, no we should not have to.  When you are in the heat of the storm and struggling to breathe, much less talk, just do the best you can to offer your regrets.  Then on another day try inviting them over and ask them if they want to learn more about TN and how it is affecting your daily life.  It dos does not affect us all the same and some people can live very productive lives continuing to work and be social.  However, if your battle is anything like mine, they will need to SEE a clearer picture of How TN has drastically changed your life.  Real friends Want to know and want to know How they can love and support us through this unique storm that IS Trigeminal Neuralgia!  

Let them know How you'd like them to respond when you have to cancel plans.  We wouldn't wish this battle with TN on our worst enemies so of course we wish our friends knew what we are trying our hardest to warrior through.  I have lost a lot in the battle of pain.  It shouldn't have to cost us to lose people that we love.  I am hoping my story can help to strengthen you and your support system.  

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and the God of all comfort, who comforts and encourages us in every trouble so that we will be able to comfort and encourage those who are in any kind of trouble, the comfort with which we ourselves are comforted by God. "

2 Corinthians 1:3-4

 

Striving to find Purpose in the pain,

Kim 

Kimberlywest21@yahoo.com