Darkest Days 2

If you are just joining, please go back and read 1.  This will make more sense.

Regardless of my many surgeries and complications life continued whether I did or not, as many of you know.  My partner at the time didn’t understand.  We were fighting and I didn’t understand why.  I tried to communicate where my head was.  I said that I would not be able to handle problems the way I used to and asked that they be mindful of that.  Unfortunately that was taken as “if you have a problem I don’t want to hear about it.”  If you think you hear something like this it is not likely the true message.  Ask for clarification, again gently.  Your loved one is already really fragile and feeling judgment and criticism at every turn.  It may not be there, but it feels that way.  So be patient and be kind, to both of you.  

So, regardless of my efforts the gaps just grew. During this time my Ex and I were experiencing a lot of tension and heart ache.  I never thought we’d break up but the events that followed a huge fight led to the most horrific and explosive breakup in my life.  It not only shattered that relationship, but also tore apart our group of friends into unnecessary factions.

My ex’s best friend Michelle (whom I had only known for around 2 years and who had only known me in increasing pain) and another friend of hers, Jo (who I was far from alone in not being able to stand) decided to both privately and publicly decry my “behavior” and my treatment of my Ex.

First I got an email from Jo which included bits like:

“your behavior has been nothing better than reprehensible.  Don’t bother sending me a long tirade about how much pain you are in.  I’ve dealt with many people who were dying in worse pain that you are in, and not a single one of them was as nasty to me even once as you have been to your ex on a fairly continual basis.”

“You aren’t somebody I would ever consider a friend.  Your behavior is reprehensible at best, and completely evil at it’s worst.  I am done with you.”

Okey dokey. So that happened.

Okey dokey. So that happened.

Many people in chronic pain already feel that people are coming down on them for the situation and how they are handling it.  We are in pain, we are confused, we are lost, and we are grieving.  Nothing makes much sense.  For as much as our loved ones miss the person we once were, WE experience that feeling a thousand fold.

Here lies who I used to be. What do I do now?

Here lies who I used to be. What do I do now?

Now, his words weren’t particularly hurtful.  It’s hard to be offended by someone you don’t respect. In fact, that little “I’m done with you.” statement made me do a little happy dance. What WAS painful was that my ex allowed him to interject himself into a fight between the two of us.  Who does that?  What are we 14 and on the play ground taking sides?  I was pretty shocked.  What I didn’t know was there was more to come and I still hadn’t heard directly from my ex.

The next day I get a text from a friend telling me to check Livejournal.  I did and found, open to the public, a post from Ex’s best friend Michelle.  Here’s some excerpts from the very long, bullying, patronizing diatribe she posted:

LJ Post from Michelle M

 Taking Sides with a Motherfucking Vengance

“You need to not make decisions until you are off the pain meds. You are sick, unwell.  Seriously.  I don’t know where the girl I met went.  She could listen to reason.  She could own her choices.  You don’t resemble her.  We lost you to the pain and you are making no attempt to get us back.”

“You are completely wrong.  Your decisions are wrong, your choices are wrong, you are 100% responsible for the destruction you are wreaking on your life and others lives.”

“Don’t blame the pain, blame the fact you make shitty choices.  Own your own actions.”

Sincerely,
Michelle

A day or so later I finally received contact from my ex and the relationship ended.  I never responded to any of them.  I took the high road, removed them from all of my contacts, blocked them, stayed offline, and stayed away.  There was nothing left to say.  I wanted nothing to do with any of it.  They say chronic pain shows you who your real friends are and this was a real harsh lesson in that.

Lesson Learned! A little too well. Ease off, I'm not stupid!

Lesson Learned! A little too well.

In both of these letters we see a common theme.  They both believed I was using pain as an excuse.  That chronic pain couldn’t possibly be causing my weird behavior.  This is the worst fear of those in chronic pain.  It isn’t an excuse, we are trying our absolute hardest to be “normal” to carry on as if nothing has changed.  When in reality it has all changed.  Chronic pain tears you and your life apart and no one walks into that situation knowing how to deal with that.  You are in terrible pain both mentally and physically and no one who hasn’t lived it understands. 

You feel terribly isolated.  Alone, lost, and at your worst.  What do you do?  My advice: find a support group.  For as much as your loved ones WANT to understand and help, if they haven’t experienced it, they simply can’t.  The people who are living it are the ones who can empathize, who will make it less lonely, and often they are the ones who will give you insight.  There are support groups online just type chronic pain into the groups tab on facebook or into google. There is one that holds meetings over the phone called Chronic Pain Anonymous (CPA) call (213) 342-3090  a recording will ask prompt you……pin number is 1952435, then the # sign, the schedule, all pacific time: sat. 11 am, sun 11 am, mon 4 pm, tues noon, wed. 5:30 pm, thurs 5:30, friday no meeting.  Also find yourself a counselor, preferably one that specializes in chronic pain.  There are people out there that understand you and can help.  You are not alone.

Of course, if I could go back I would change things.  I would sit down with my ex and try to talk it out.  Try to understand what was going on to create such a gap between us.  I didn’t because I was afraid.  Afraid of what my ex would say to me.  That I would be hurt and rejected, told about all my inadequacies, told about how much I’d changed and that I was no longer loved. I knew I couldn’t handle it, that it could be that final straw. I found out later that my ex was convinced that I was no longer in love. Life is like that.  You can’t change the past, you can only do your best at the time and live with the consequences.

I walked away from everyone involved (which was a LOT of people) and sometimes that may be your only option.  It isn’t a failure on anyone’s part.  Just sometimes it takes time and especially space to find your way through.  Don’t be afraid to ask for what you need.  You might be surprised how willingly people will comply.  Not every story has to go like this.  The people around you do love you and want to help.  They just don’t have any idea how to do so.  A little honest communication, no matter how scary, will go a long way.

Sometimes it's best just to let go.

Sometimes it’s best just to let go.

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About leitis23

I'm an adventure, living life to the fullest, and doing stupid things enthusiast, whose life took a serious left turn into chronic invisible illness. My saga of adventures in the world and in medicine never fail to keep life interesting.
This entry was posted in anxiety, caring, chronic fatigue syndrome, Chronic Illness, Chronic Pain, compassion, confused, coping, depression, health, helping, invisible illness, pain management, suicide, understanding and tagged , , , , , . Bookmark the permalink.

9 Responses to Darkest Days 2

  1. Maureen Roberts says:

    Oh Kristen, this is such a familiar story and my heart breaks for you guys. I’m so pleased you kicked those hurtful people out of your life; seek friendships or cherish those who are trying to understand what it is like to live with chronic pain. I have told my daughter it is far better to have a handful of friends who do their best to understand the changed person you have become and stick with it, despite not always being able to work out what is going on.

    We hear all the time the sufferers telling us their doctors, family, friends etc., do not understand them and are often dismissive and cruel. To those people who are so unkind I would just categorise as ignorant. In the early days of my daughter’s illness I would have put myself into that category – I had never heard of the condition and had no idea what was going on. I found it hard not to be frustrated and yes, sometimes cross! I also had doubts too, I’m ashamed to admit. After at least two years of feeling that way, I realised I had to make contact with others and read more about the condition, in order to understand more. I’m there now for sure. 🙂

    My daughter’s husband has struggled too and their marriage is constantly under strain. They are still sticking with it and trying to work through their problems. It is very tough for them both and I pray they can make it and learn to live a different life together with their children. I think some men particularly find this a hard illness to understand. I won’t go into all that as I guess you know that already!

    Keep writing Kristen, your pieces surely can help so many people.

    • leitis23 says:

      Yes, I do think that dealing with the people around you and your doctors complicates an already tough situation. There are good people out there that will stick with you through thick and thin and chronic pain is certainly the thick. I understand that from the outside it is very hard to be understanding and compassionate towards someone in chronic pain. Especially when you knew that person before. Part of that is because you want that person back because you love them and you want them to be happy. I’m sure in some ways it seems like they are making themselves miserable. Part of it, I will admit, is that it is hard to understand that pain can do so very much damage. Even those in chronic pain don’t understand that. We all have experienced pain, but for most people it is acute. It hurts, it sucks, but it does go away…and you KNOW it will go away. With chronic pain that just isn’t the case, you don’t get to look forward to feeling better tomorrow. It could be worse tomorrow. And you know it won’t go away, that somehow you have to live life with constant pain. The pain just compounds as time goes on. The pain might not actually get worse physically, but mentally it tears you down. You have to grieve your loses and find your way in a new life that just isn’t as good as it was and that is a really hard pill to swallow. Plus it is all so very out of your control and that somehow makes it so much worse.

      I think you made a great choice in taking action, doing research and finding groups. You probably found that Karen’s experience was quite common, but also found that your feelings were also common. Unfortunately, all of these experiences happen to so many people and yet we all believe we are alone. I think that is the fatal fallacy of chronic pain. We all feel so isolated and lost. It is research, groups, reaching out to others in similar situations that will ease everyone’s burden. We all seek understanding.

      As for her husband that is a tough one that I think about often. I was in a very stable, loving relationship that I believed was forever when I got sick. Part of me envies those that still have a partner there to support them. On the other hand I remember how hard it was for us even before the explosion. Trying to get someone close to you to accept all the changes that occur. Trying to keep up with the little things to keep your partner happy even when you really don’t have it in you. Trying to be what your partner needs when they need it, regardless of your physical and mental state. It is a huge burden to bear. I would be lying if I didn’t say that some part of me wasn’t relieved that I no longer have to hold myself together for the sake of someone else. That I can hide in my room and shut the blinds on days when I can’t even stand myself. Relationships are a lot of work and stress even when everybody is healthy. When someone is sick it brings about a lot of resentment over things that may or may not be within their control. Their is a lot of anger and loss. It’s a hard hill to climb. I’m glad they are trying their best to find their way through it. I hope that he takes the time to do the research and read the groups and communicate in loving ways. She should take him with her to the doctors so he sees the reality of what is happening. The cold sterile life of living in the medical world. I know it is hard for him too. He has a heavier load to bear. She probably needs a lot of support and understanding and that can be hard to give, it can be frustrating to be always asked to compromise, to understand, and to help. My heart goes out to both of them and the boys, who are freaking adorable!!!! It’s not an easy life and if everybody admits that it is hard on everyone then it will probably be a good starting place for finding a way through.

      I’m no therapist. I don’t have all the answers. All I have is a lot of hard earned knowledge through some rough experience. All I ask is that people do their best to practice compassion and understanding for both side of this very tough situation. You’re a great Mom. Sure you may have made mistakes (we all do!), but you did the right thing and Karen is lucky to have you. Just hold on through the rough times and try to capture the good ones.

  2. I live with chronic pain as well and have had some similar experiences (except for the location of messed up nerves). I’m thankful for the true friends that have stuck this out with me, but having constant fears of abandonment on top of pain that causes plans to be unstable (hard to keep friends sometimes if you are constantly canceling)….it’s hard. I don’t really have coherent thoughts for you…but you aren’t alone.

    • leitis23 says:

      Yes, I do think that because we cancel plans a lot our friends can get frustrated and stop trying to make plans. I don’t think that is unreasonable. I would get frustrated too. I think that our only tool is communication. The best thing we can do is do out best to explain our situation to our friends and family. The other thing we can do is be the one to reach out when we are feeling well enough to make plans to spend time together. Or find ways or situations in which we are most likely to feel our best while spending time with people.

  3. Kate Fuller says:

    I wasn’t sure how to comment on Part #1. My mother was bi-polar & in constant pain due to a botched surgery, tried to commit suicide several times was in & out of mental hospitals since & was 6 (i’m now 63). Tough situation to grow up in. Mom died just a month after her 70th birthday & on the 3rd day of using methadone to treat pain as part of an experimental study. Suicide is not an option for me but I do understand the pain both physical & emotional….Now reading Part 2, I understand the darkness. I realized what was different for me from my mom was I have a wonderful, loving & supportive husband. We have been married almost 37 years. My parents divorced when I was 18. My sister did not understand my mother’s illness (I was mom’s caregiver) & when I tried to talk to her about Fibro her response was “Oh, I work with a woman who had MS, that’s much worse & she NEVER complains”. I never spoke to my sister again about my illness & in fact I had no contact with her for over 2 years as the result of another family matter. We are in contact again because my dad (I was his caregiver) died last month from Alzheimer’s & I am say very little to her about my personal life & certainly do not speak of my pain I was diagnosed after moving from one state to another & it’s taken me THREE years & SEVEN doctors to finally find a doctor who is knowledgeable & compassionate. Forget making friends who understand, I have given up after 5 years of living here. My world is small but happy. I have my husband, my cats, my yoga & my Facebook friends…..Right now I accept the pain but it does get old & I get so tired of being told if you only _______________ you would be cured. I’ll be 64 in December & I worry about the future……….I’m sorry you have been treated so poorly, words do wound & add to the physical pain. What right do these people think they have to speak to you this way? You are so young to have experienced so much pain. I understand the darkness but hope that your writing & others like me are able to bring some light to your life.

    • leitis23 says:

      Unfortunately your story, like mine, happens way too much. I think it very likely that anyone with a chronic illness or pain has heard any number of “if you only…” everything would be fixed. It feels like an attack. It feels like they are saying we are doing something wrong. Yet, I suspect that this is their best attempt to help. It is a terrible tactic, but apparently something about our society says this is the way to go about it. I don’t get it, it makes us feel crappy and it is hard for me to justify it for them when I hear it, but I do try.

      Now the people that say things like “I know someone who has x which is so much worse than you and they never complain.” I find these statements hard to justify. I think they are mean and completely invalidating. What people who say such things don’t understand is that it would actually be much easier for us to have a more recognized or fatal disease because then we would never face all this freaking criticism. As you read I was compared to a cancer patient. You know what? I would be grateful to have a cancer diagnosis. I know that sounds terrible, but here is the logic. For one everyone knows what cancer is and no one is going to tell a cancer patient to “get over it” or “get more exercise” or anything else because they realize what a ridiculous statement that is. Another reason is that cancer can be fatal. Why is that good thing? Because it means there is an end. That whether the cancer goes into remission or you die you know that at some point this suffering will end. I would give anything to know that my suffering would end.

      Some people just won’t understand. Some people will be cruel. Walking away is your best option and this happens in life whether you are sick or not. I think the reasons and ferocity are just more shocking when you are sick. You live and you learn. Just some lessons are harsher than others.

  4. Pingback: Darkest Days 3 | Then Everything Changed

  5. leitis23 says:

    Yes, I’ve said it many times. The one thing that those suffering chronic pain crave the most is understanding and compassion. The reason we wish for it is because we are denied it at every turn. Our doctors doubt us, our friends and family invalidate us and it is almost more painful than the disease itself. Most people struggle just to get a diagnosis and that just should not be the case. We feel helpless and alone in our struggles. It takes time to realize that we just have to ignore these people, even the doctors, and keep searching until we can find someone that will help and support us.

  6. Maureen Roberts says:

    Thank you for your understanding and kind words. They mean a lot to me and agree with everything you say. Love what you said about the grandchildren…. I think they are adorable but then I’m biased. 😉

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