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.

Author: Undeniably Sara

Abuse is an unfortunate reality in this world and is more than physical assault. The invisible trauma we suffer can result in chronic illness, which is a relentless beast gnawing away at the soundness of mind. Education and support from others are vital in the healing journey.

28 thoughts on “Ending Invalidation”

  1. I hear you Sara. No one sees the daily struggle, and few can empathize with the pain and suffering. I read recently that we live in a society where illness is shunned. People just don’t now how to relate. Hugs to you.

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    1. Thank you for the hugs, V.J. You bring up an interesting point about illness being shunned in our society. Do you think it is because people don’t know how to relate, or is it that they believe it is a sign of weakness? Before I became ill, I had those preconceptions as well as a complete lack of ability to relate. I understand the thought process on both sides of the fence. I know my family treats me this way because it is a part of their belief system, not a religion, just how they view the world. It’s sad.

      Liked by 1 person

  2. First let me say to hang in there. PTSD, and family, and long-term (or difficult) illnesses are hard, and complex issues. I do agree with not talking with family about it once that rollercoaster is in progress. During my divorce ordeal, I found that if I did NOT tell family where I was at, the rollercoaster, for them, stopped. I too have at some point dubbed myself ‘the invisible girl’ because I it seemed I was not seen nor heard for long after leaving home. You are an empath, I would say. Very sensitive to all vibes around you. And you may suffer because of your sensitivity. It’s not a bad labe either. Empaths feel for others. I am an empath but did not know it till well after my divorce. Thanks for the great post. Love and Light sent your way!

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    1. Thank you for your kind words. I’ve never been fond of rollercoasters and judging from how my family reacts to my issues, they don’t care for them much either. I agree with you that I am probably an empath. One of the strange things I’ve noticed is that people, virtual strangers, tell me things about themselves, unsolicited, that I wouldn’t share with a stranger. It is interesting and gives me insight into people that others may not see. You are right, though, it does cause me some suffering. I need to read more about empaths and learn how to better protect myself. I enjoyed reading your comment.

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  3. God bless you for doing what is BEST for your family – too many people have no idea what it is like to live with CI nor do they try. It is easier for them to critize then to care.
    Sending you love…….and prayers………..

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  4. There is illness and divorce in my family too. I have spoke of it sometimes. There is no trite and easy answer but my own solution has been to run; metaphorically speaking. To let go, to leave behind the inner turmoil I have battled with so long. As have most of my siblings alas.
    Somehow or another the entire sibling relationship soured. Was it money? A fight over the will of our parents.

    Not for me, no. But other siblings worked to different agendas.

    I wonder if there is a family in the world not troubled by the pains of living? The Buddha, I seem to recall, thought not.

    And so we battle on. Searching for peace.

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    1. Sibling relationships can be so complicated, and I ran a long time ago. I don’t speak to my ill sibling but rather to another family member who is an intermediary. There is a strange space between us that neither of us is comfortable with, yet we do nothing to find a repair. Your right that all families have these struggles at least some of the time. Living this life is a battle, and peace is the ultimate treasure.

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  5. When I was a child and had severe motion sickness, I, too, was told it was all in my head, and my parents would become angry when I became sick. I was an adult before I was diagnosed with a eustachian tube disorder that caused, and still causes, the dizziness and sick feeling. And I have migraines, not as frequent as when I was younger, but I still have them. And fibromyalgia, which may have resulted from childhood trauma. I think the worst part of it all was that my mother believed and always told us that illness was a result of sin in your life. That ‘religious’ component only made everything worse. So hang in there! You are not alone.

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    1. I’m so sorry to hear you were also bombarded with the religious component, and I can only imagine how that made things worse. I am fortunate that my family isn’t strictly religious.
      Part of me believes that, in years past, children’s feelings weren’t considered to be very important, and that is why our parents discounted us. There must be some kind of emotional barrier that allows a parent to be angry at a sick child instead of compassionate. I know that my mother, in particular, was not raised by kind parents, and that may be why she reacted with callous. My dad was raised to believe illness was to be hidden and was a sign of weakness that no one should see. I think merely admitting that I was sick was an afront to them. It’s not an excuse, just me trying to understand.
      Thank you for your comment. It’s good to know I’m not alone.

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      1. It’s ironic that my mother, who believed illness was caused by sin in one’s life, died from cancer. After her death we found out (by accident) of her secret life and the fact that she had affairs with at least two men. My younger brother and younger sister are not the children of my father even though our mother was married to my father until her death. My dad, now 91 and in good health, always denied his illnesses but in his old age has become very understanding of others’. Hang in there, and take care of yourself and your kids!

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      2. Many times, when a loved one passes, the truth comes out in all its glory or gloom. My mother passed a few years ago, and I learned things that shocked me but also helped explain so much. My dad, who I always thought was the one who would never change, is like a different person now, so I hear what you are saying about your family. We just never know.

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  6. First of all,
    You’re an awesome Mom. Just wanted to put that out there. There are lots of awesome Moms out there. I have one. She always listened to me and took me seriously too and that’s the best gift anyone can give another human.
    Secondly, I also have multiple invisible illnesses: MS, Fibro, PTSD, Chronic Depression, Severe Anxiety Asthma etc. That’s how I know that the simple words “I believe you” are the single three most powerful words in the English language when strung together. I’ve found “The Spoin Theory” helpful in describing living with an invisible illness to healthier friends and family. I even went so far as to actually illustrate it with my spouse who is on the autism spectrum because he wasn’t going to understand any other way. He still doesn’t, very well, but it helped. It might be helpful if you haven’t already heard of it.
    Best of luck to you and your family.

    Liked by 1 person

    1. Thank you for your kind words, Melinda. I completely agree that having one’s feelings and pain validated is an incredible gift.
      I’m glad you brought up The Spoon Theory. Of course, I’d never heard of it until after I’d been sick for a while. It can be a powerful tool to help explain how chronic illness impacts our lives. For me, it took away a ton of guilt I placed on myself for not being able to do all the things I thought I should. It also allowed me to look at my life and prioritize the most important activities.

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  7. One thing is that families are systems. I was the village idiot, and was responsible for my parents’ well-being. I did spend years in therapy – different ones, at different times. I finally had to cut my family off since they were making me insane according to my doctor. My family of course reacted predictably, but I had built bridges to them over the years. I went across the bridge I built and had to drag them across, and then they charged me toll for my own bridge. After enough of that, I blew up the bridge. I figured they could build their own bridge to me. Never did. They are all dead now, but I never regretted cutting them off.

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    1. The bridge metaphor is perfect here, isn’t it? We are ostracised, then seek help to “fix” ourselves, reach out to those who hurt us in the act of forgiveness only to be knocked back down. At some point, we must destroy the bridge that brings us nothing but sorrow and pain, and then we can see what those on the other side are willing to do. It is hurtful, but it is the truth. Who, then, are the real village idiots?

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  8. It is so frustrating that there are people who want to brush you real problems away. If your children struggle with PTSD they are lucky to have have a mother who understands. Put that person’s negative words away and leave them there.

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  9. Invisible illness is hard enough without having family that twist things back on you. I am sure I had fibro for more years than I knew because I was dealing with an alcoholic husband who always said I was to blame and it took all my energy to present the “perfect family” in public. I am so proud of and happy for you that you are breaking up the problem that has passed down thru generations. You are a great mother… protect those children and teach them what a loving family can be like!

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    1. Isn’t it interesting how much we take on from other people? We absorb all the negatives and force ourselves to churn out something positive? I’ve been in a relationship with one alcoholic or another my entire life, and I also suspect you had fibro long before you realized it too. We are so busy trying to make everything ok that we leave ourselves in the dust. I hope to be successful in breaking the cycle for my children, and I realize I have so much to learn about how. Thanks for your comment leigha.

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