My Story: How Do I get Back to Being “Me”?

My Story: How Do I get Back to Being “Me”?

By Katelyn O’Leary

Katelyn OLeary dress

Katelyn O’Leary

“But I don’t want to go among mad people,” Alice remarked.
“Oh, you can’t help that,” said the Cat: “we’re all mad here. I’m mad. You’re mad.”
“How do you know I’m mad?” said Alice.
“You must be,” said the Cat, “or you wouldn’t have come here.”
-Lewis Carroll, Alice in Wonderland

We all go a little mad sometimes. But it doesn’t mean it’s ok.

It’s funny how the media portrays patients who suffer from debilitating disorders. They are always saintly, sweet, and they are “fighters.” They never get upset, they never show their pain, and they never make anyone feel small.

I think I’ve been trying to be that kind of patient for too long.

Two days ago I fell down a flight of stairs and I sat, semi-crumpled and didn’t move for fear of hurting myself further. I was in a lot of pain but I was glad. I felt as if I deserved it.

I like to think I’m a good person. Everyone does. We count our blessings and good deeds hoping those count to whoever is keeping score in the universe.

But our supposed goodness is tested time and time again, not through the good moments but through our worst. I always told myself I would never act on my rage.

There’s a debt chronic pain patients pay every day. They allocate a certain amount of energy to remain calm and even put on a good face. And when those emotional funds are depleted – we lose sight of who we really are.

I can’t blame a condition for how I act. How I treat people, known and unknown. There is always an answer to why we do the things we do. And for me? My disorder, this terrible terrible disease, has formed a black cauldron in my gut.

I let my fury, my fear of the future, the unknown and most of all – my carnal and animalistic RAGE seep into this cauldron of Black emotions. And when I am pushed or feeling threatened – I explode. The rage is like a monster, it consumes all in its wake. I will say things I would NEVER had said prior to my diagnosis.

But that’s still not an acceptable excuse.

I have so much anger and feelings of betrayal from my family. A lot of my extended family doesn’t understand (and it’s a rare disorder so I get it). My close family – while they love me and wish I was better, there are moments where I can see the disappointment in their eyes. The sadness of knowing I’m not “Katie” anymore.

“Katie” always laughed, joked, and fought for what was right. She tried so hard to follow her dreams and pursue even the hardest goals and she would leap and bound over them. “Katie” was athletic – she ran 4 miles 4 days a week. She was an ear of reason for her sisters and brothers and she was always available to her parents.

I don’t know how to be that person anymore.

I thought I was helping a member of my family by trying to protect her. And I failed her. And she failed me. When the anger consumes me, all I want to do is scream “YOU DON’T KNOW WHAT IT IS LIKE TO NEVER RUN. TO KNOW THE LIFE YOU FOUGHT FOR WAS TAKEN BY A GENETIC GAME OF CHANCE, 26 out of 200,000.”

I fail to recognize their own pain. And that doesn’t make me a good person: it makes me weak.

Most days I feel as if a bomb has exploded in my chest, and I’m looking around at my family and I’m desperate for help. I’m falling to the ground. They stare at me, puzzled by my pain, this invisible grenade turning my insides necrotic but leaving my skin and bones normal looking. And they don’t know what to do or say.

My family is full of good and loving people. But there is a great divide between me and several of them. And I let that anger well up inside me and I lash out. Sometimes so loud and so hard it’s as if my brain blacks it out and I don’t even remember what happened.

It has taken me a long time to be honest about myself and my own role in my illness: I’m failing. And my family suffers for it in two ways: for not being involved and seeing me for what I am,  and for pushing buttons that they are used to pressing, resulting in my blackout rage.

How do I change that? I don’t know. But for right now all I can do is try and find a way back. To say I’m sorry. To say I love you. When you’re lost in the woods you follow your steps and the trail backwards. But how do you do that blind?

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Authored by: Katelyn O’Leary

There are 22 comments for this article
  1. Heather at 4:31 am

    Great article and it is so true that many look at us and see us as looking fine, not realizing the energy it really takes just to do simple task. I have AS which autoimmune as well as my grandma, mom, uncle, and cousin on my mom’s side spbtjry all totally understand as well as we all have fibro, neuropathy, Osteoarthritis, and more but the pain is so real and makes you mad and angry on days when you just can’t get out of bed or do anything and others feel you just need to get up and move. Well easier said than done. I could push myself and then really he down for a week. I already have to use a cane at times and even an electric scooter. Some on my dad’s side u derstand and some don’t they believe you look great surely you are not in that much pain you just have to stop laying around. Well I never lay around unless totally necessary, I always sit outside all day reading and researching as I’m also an advocate for multiple organizations and a pain ambassador with USPain so I’m busy just not to them but I know my body and my boundaries and I have just learned to say NO. I always share the spoon theory alot as well. It helps others understand sometimes just what it takes to do a simple task. Or simple to them and exerting to us. So stay strong. Stand your ground and continue to fight. Love to all.
    https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

  2. Janet at 4:20 pm

    Dear sweet Leah,
    I too am 59 & thought I had it bad until I read your story. I’m sad for you, & have several ideas but maybe you’ve tried it all? For one, there art surgeons that will donate their time and services to some I know my son had his job fixed with no insurance and no money. It may be an option to use Medicare I’m not sure. As for the pain, this can be owner off record but if you are not drug testing for narcotics I would be using marijuana it does not need to be legal to use it for pain. I can have everyone disagree with me right here on the spot but if you are in pain take care of yourself. Pain makes us crazy in the brain and suicide is not the answer.
    Another quick maybe it seems too easy answer for you, is to find someone to write first I journaled to myself and then I started riding in a group and found a few penpals that also have RA. You can find me on Facebook easily and I will reply back and write you.
    Janet Lemay Mollica – message me anytime please!
    I am a former biker too & we can face time, chat etc.
    There are people in pain like you and they are angry and hurt and suffering but there are groups on the Internet without leaving your home that you can reach out to.
    I’m out of ideas for right now because I’m babysitting twin 18-month-old granddaughter’s which is very difficult for someone like me and working full-time, and very little support with my disease.
    I send you hugs & a few paltry offerings with a sincere heart.

  3. Katelyn OLeary at 8:29 am

    Thank you to everyone who has commented – I have read every single one and it means so much. I wish you all well.

  4. connie at 11:24 am

    WOW Someone gets it! While I do have anger and frustration at the pain most of my anger is at a system that doesn’t understand, doesn’t want to understand, and is doing much to take away what little life I have!

  5. Bruce at 2:11 am

    Get rid of your family, Kate! I did! I moved to Las Vegas so I can wager on sports because that’s the only way I can supplement my govt check. So quiet out here. Here’s the key – If members really care about you, they can come visit/stay/help you out. You don’t have to put up with their tried and true abuse just because they’re in the neighborhood! They have to put in work just to be around you. They will start dropping like flies. Guaranteed. And it’s all for the good. Look, you have more problems dealing with your illness THAN ALL OF THEM COMBINED. That is, if they’re halfway normal physically. Quit punishing yourself by looking for their approval, or trying to be on the same page with them. You’ll never be on their wavelength again, because we only have so many spoons, and they will never truly understand that, no matter how hard some of them try. Give yourself a break. Be good to yourself. BE YOURSELF. If that includes going off every now and then, so be it. You’re human, and nobody can deal with screaming pain all the time, we were not built for this. When people got ill in the past, they usually died. They didn’t linger for 30-40 years in some hell like we have today. I’ve changed a lot, learned a lot about what matters, and it ain’t what matters to the rest of my family. Man, I even got a cat! I used to hate cats!! I really love this one – nobody wanted him. Except me. And we will always have that in common. HUGS

  6. Diane Yasinsky at 10:44 pm

    How do we get people ,family and our Doctors to believe how much pain we are in? Animals do not get treated this way . Something is very wrong with this.

  7. Joan Hamm at 7:49 pm

    We the people.. The working class who built and still build the USA are more needed than some rich and some politicians. We work for a paycheck and medical benefits. The jobless and sick need help! Our government is working for us. Without us we would not need them to rule us under their decisions to hurt us in any way. Sandee L. And all others who comment here are fighting for our rights with No violence!!! We need to stick together and demand our Constitutional rights! If a rich person was unfortunate to get one of our diseases you bet they would get medicines and pain medicine they are trying to take away from us middle class and poor people who need these medicines too. Sandee said it right when she mentioned the bad meds on the streets Etc. Sick people only use the medicines that help them… Not for pleasure. The meds know exactly where it is needed in the body and goes there to ease the pain. Someone start a post on FB and other sites so we can pass it on for people who don’t know what to do for help. Please. I said much on these comments but after years and many healthcare horror stories I have let it out.

  8. Michelle Garcia at 6:57 pm

    I feel your pain! Why do they always feel that all our pain is in our head and don’t believe a word we say!! Why won’t they treat our pain!! Hugs to you!♡

  9. Msmarie at 6:40 pm

    Because I cant afford to be fired as I live in a smaller locale, I have always been courteous to physicians, never yelled, raised my voice etc. Then after my last botched surgery, my pain shot up, I was sick and no one knew what was wrong. I was getting frustrated and no one was helping. At my pain doc visit, she wanted to put me on another antidepressant. I yelled at her, that she could put me on 100 antidepressants, it wasn’t going to make my pain better!!!

    She changed my meds and upped the dose but at the same time she made me go to the mental health facility. She wanted me to go to the inpatient part. And that’s gonna make my pain better how?? I couldn’t believe it. I don’t have a psychiatric problem. I have 9/10 pain 24/7. She would be angry too if she had gone through what I had with another botched surgery, stress, pain, finances, almost losing my job.
    I have done lots of counseling so have nothing against being seen by mental health but everyone acting like I had gone off the deep end because I had increased pain was BS. I was wasting away, not going crazy.

  10. Michelle Garcia at 3:16 pm

    Hello, you are right on with your comment. It is like you know what I am going through in my life to the letter. I am getting so upset with these CDC guidelines! They don’t know me, but know what is best for me?? I have had 7 surgeries, followed all directions, jumped through every hoop, and now they want to limit my pain medication, which I have been on since 2008, because of some guidelines! This is insane and inhumane! Any suggestions or ideas on how we can continue to fight this problem? Thank you.🙂

  11. Michelle Garcia at 2:54 pm

    Thank you, Cathy, for giving me something to think about, “support group!” Some advise into finding a group who are honest and caring who have daily debilitating chronic pain and not there to make you feel worse but lift each other up? I need help as I have thought of suicide, but to chicken to actually do it, and need something as some days I just sit and cry all day and feel so alone! Thank you for sharing!♡♡

  12. I. M..Notgoodt at 2:48 pm

    I accepted the docotrs diagnosis. I followed the docotrs “orders” to the letter. The back and leg pain got no better. I accepted the docotors remedy. I had a lower back surgery. I followed the “heal time” orders, walked to keep scar tissue from forming, stayed active. A year later, worse pain. I again accepted the doctors diagnosis and remedy. A far more extensive lower back surgery, fastening metal plates along the side of my vertabra by screwing bolts into other vertabra. I am grateful; that I am not paralyzed. However, after the fusion surgery I am in more pain than ever. I accepted my docotrs diagnosis once again. I, upon his referral was to be treated by a pain specialist. I truly thought that the specialist would treat me with a combination of undoable exercises, possibly more shots or infusions and medication. I was fairly well right. After about 6 months at the pain specialist, I was told that there was not any further surgery, physical therapy, shots, or infusions thqt would help me. He advised me to take the opioid pain medication. Afterall, that is what the medication is for. That is what we (the pain specialists) are here for. I really did not like the idea of taking pills for the rest of my life, but I was in extreme, excrutiating pain to the point I could not sleep, was not hungry, sharp and quick to temper with my family, and could not work and support my family and myself. I resolved to take the medicine, after all, it IS being prescribed by a physician and I see a great deal of others in pain doing it, taking pills. Here I have been for 18 years, taking oral medication. I am, well was, still working. I have come to terms with taking opioid medication, after all it is called……medication. Now, after 18 years of different medications, and finding the best medication that sufficitintly eases my pain the CDC has set forth the new “guideline” to physicians that will reduce most opioid medication to non cancer chronic pain patients.It seems that if we do not have a malignant cancer, then the CDC knows the proper medication AND dosage for us without even evaluating the patients on an individual basis. It is true, a chronic pain patient does exert energy trying to put on a “normal”, pleasant face even when in agony. As far as staying awake most hours of the night for several nights in a row and then collapsing from fatigue and finally getting rest, that can’t be helped. I refuse to take sleep mediciation..I, personally, am prescribed 33%, one third LESS (of the same) medication that I was 6 years ago. It is NOT because the pain is less, it is because I do care about the amount of opioids that I need to get sufficient pain relief to function on a daily basis. I do not want to become more irritable or “less my true self” than I have been for some time now but I have no choice as per the CDC knowing my physical situation better than my pain specialist. If there is another, better, or even possible way for those of us in chronic pain to relieve enough daily/nightly continuous pain to just function without thinking morbid thoughts, I am sure we who seek pain relief through oral, opioid,medication now would be extremely happy to have another avenue to at least “TRY” to contain the disabling pain. The CDC advises that what has been published is just a “guideline” and your physician/clinician has the absolute and final “say” in the treatment and medicaiton you receive, but if you have not found out that it is more than a “guideline” yet, you will very soon!.

  13. Rick Kelly at 2:42 pm

    Gerald, I too had the same thoughts. Heck, between having the beast in both hands, brain and sitting, I simply wonder if I have the same disease too. How in the heck produce? Travel? Raise families? Clarity of thought? I’m fighting like hell just to put my pants on. Sometimes reading these helps and sometimes it doesn’t.

    I haven’t slept for more than 2 hrs straight in 5 yrs. I have the cold variety RSD throughout and the autoimmune factors are brutal.

    Everyone is so positive here and quite frankly, I see no end to this horrific life.

    Best to anyone whom suffers, period.

  14. gerard l becker at 1:16 pm

    I , like all those comments before me, I can completely relate to your physical and emotional reaction to endless suffering! What is amazing to me is your capacity to focus your mind so eruditely and heroically ( et al ) at the computer and mentally describe the horror!
    I find brain fog a bitter enemy in my quest for prolonged concentration at the key board!
    perhaps someday I too shall rediscover my “lost writer”!

  15. CathyM at 11:31 am

    I certainly empathize – but say this: you haven’t failed. It’s one more lesson in a life full of them… we are being honed by life and suffering. As I hit 61, I realize I have to face the whole fact of eventual death (could be sooner, could be later) along with the pain. And I agree with whoever talked about rage triggers – it’s really good to identify them. And for me the biggest is when I try to do more than I’m currently capable of; try to live the life I once had and won’t again (without a total miracle).

    There’s little or no guidance/support in our culture for this kind of learning (as you mention, the stereotypes of those with chronic illness/disability are skewed), but if you can find a support group either for your illness or for disability in general, you would at least be among those who DO understand (and we all need that) and you might find clues to how to move toward acceptance (and don’t think I feel ahead of you – I’m raging or depressed half my days)… It’s the story we tell ourselves about our lives that has a lot to do with our moods and attitudes. I’ve been reading 12 step books because they also have advice – I didn’t cause my chronic pain, I can’t control it and I can’t cure it, and one day seems to be max for trying to deal with it… but I can make it a good day or a bad day.

    I wish you hope, support and lots of loving – thanks so much for sharing your heart with us!

  16. Anne Fuqua at 9:59 am

    Beautiful description of an ugly thing. I think every single patient who reads this will identify with what you have said. I know that I do. You are still you even though it doesn’t seem like it at times. Life changes everyone. Usually, it’s expected and just part of life: growing up, getting a job, settling down , getting married, having kids, raising them, and being a grandparent. Chronic pain throws a monkey wrench covered in TNT into this equation. People don’t understand. They become distant and don’t understand what’s happening or it’s too sad for them to face the grief of what’s become of the life of someone they care about.

    It’s not all negative and I truly believe that things DO happen to prepare us for the future. You ARE stronger even if you don’t feel that way. Unfortunately you have paid a very high price for this. Hang in there. Everyone changes but we’re “still us” deep down when you look through the finger prints of life printed on the window to your soul.

  17. Jean Price at 8:55 am

    A lot of us can identify with MANY pieces and parts of your story, Katelyn! Both those of us with pain, and even those who have gone through other major life changes that weren’t “positive”! I believe the ways we act out in pain (and in crisis) are ways we’ve always used up to then. So, I’m still me. It’s just that my reactions with pain can be sharper, more cutting, maybe even more destructive…until I learn a better way! Before pain, we were active and busy and could keep from looking deeply at what perturbed or angered us or how others impact us and we impact them!! We probably had more of a “live and let live” mindset and just let MORE things roll off our backs!! Yet when life changed and we had a multiple losses due to illness or injuries, and the pain from that…we only had whatever coping strategies we had built up to then…and they were usually unpracticed and not the healthiest or the best relationship tools!! So we can choose to learn to cope, often by trial and error…especially when the change hits us in an area we’ve always taken for granted….”where we live”…in our bodies!! And it’s hard work at a time of chaos and with our grieving! Which makes us more sensitive and very fragile…and in need of support, when we may not be skilled at knowing what we need or even how to ask for it!! This is usually a disaster waiting to happen! And can have lasting effects on us and our families! The good news is we can choose to work on this!!

    BEFORE pain, I had a lot of anger…anger about things I couldn’t control and anger about the way others behaved! Like the people who littered, who didn’t obey the rules of the road, who were unkind to others, who didn’t pull their own weight at work OR at home, and even those who chided me about being a “perfectionist”! I wasn’t, not in my mind…I just wanted to make life easier for myself (and others)!! By following rules, having everything in its place, and by not having to redo what I’d already done! I tried to find the “RIGHT”way to do things and the “BEST” way to think and behave!! Two and two were always going to add up to four, in my world! Especially IF I worked hard, obeyed the rules, and didn’t lie, cheat, get sloppy, or stop trying! And I thought everyone was the same.,.literally…and those who didn’t succeed just didn’t work hard enough!

    NOW, THATS ALL PRETTY LAUGHABLE! But it wasn’t then! The key for me was when a person I worked with said….anger is merely a value in conflict! It’s good if you use it to point out your values to yourself….as long as you remember they are YOUR VALUES…and don’t judge others who don’t have the same ones or who have the same ones yet ACT on them differently!! WOW, my anger could be a good thing then! And I started to learn a lot about myself…some of it hard to swallow, but worth knowing so I could choose to change it!! And some of it affirming, because I had no intention of changing what I felt was good. This all also opened up a spiritual time for me, and I felt at home for the first time talking with God and about God!

    THEN…pain and the inability to function came along…and my world didn’t add up, but through no lack of effort from me! Or wrongdoing! All that I had previously learned was tested big time…and I learned then we never really get done!! We always struggle with relationships and to find our peace, along with our purpose in this world. Pain makes this more complicated…especially now with so much negativity surrounding pain care! Yet every day we get the opportunity to heal a little bit of ourselves where we do have control…our thoughts and actions and how we relate, and to work on healing any relationships damaged by our situation OR our actions/reactions!

    Maybe the biggest awakening in this was I could quit trying to get those I cared for to come around to my way of thinking! What a relief, since it rarely worked anyway! Because what’s right and best for one person may not be for another, and how boring life would be if we were all the same! I think this is really important when it comes to living with pain and relating to our loved ones!! Unless someone has lived with pain and decreased function…we can’t “make” them see and feel what life is for us! And that’s actually okay…I wouldn’t want them to experience this at my level! I just need them to affirm me as a person, to know I’m doing a good job within my limits, and to stay by me! Expecting them to understand fully isn’t really fair. Yet I can expect them to trust me and my experience if they know me! And that’s a must in any good relationship!

    When my parents taught me everyone was the same…no one was worse or better than anyone else…as a way to teach me tolerance and human kindness…I took this quite literally! And I didn’t even know it for years! So I’ve reworked those old tapes to still keep the thought that we are all human beings and worthy, yet let go of thinking everyone was EXACTLY ALIKE! In their thoughts and abilities! Truly, we are all very unique…and I’m still very much me…only more experienced and more skilled at many things I never dreamed of! I don’t think we have to “get back” to ourselves…as much as we just need to realize pain has revealed another “layer” of us, another part of our being and our lives. And we will enhance some of our traits, and struggle with others until we find a way through that’s right for US! Hopefully those we care about will also learn and grow with us…I think that’s mostly what life is about in the long run! Pain just intensifies the importance of this!

  18. Michelle Garcia at 7:54 am

    I can relate exactly to this article! I love this blog as finally someone gets how horrible life can be! Chronic pain is a dark and horrible place to be in and is full of anger. I to use to run and laugh and now all I do is sit in fear and silence waiting for the next episode of pain!

  19. Rick Kelly at 7:54 am

    Wow! So it’s NOT just me? Geez what a read. It was as if you have been in MY shoes. Or should I say ‘ in my hat?’

    I have turned difficult situations ( which frequently happen ) into a game of personal/emotional strength putting a premium on identifying those RAGE triggers. As difficult as it is, I have found it the only way to ‘cope’ with this horrible disease RSD. I too fight not to use this disease as a walking stick, but quite honestly, it is. It changes you. You have to reinvent yourself. I too had a very dynamic and productive life until the beast went full body.
    Every waking moment is a challenge. You can either use this horrific situation to improve your inner strength, or not. RSD ain’t goin to change, so I figure I HAVE TO as I can’t live with the anger inside. Also, why can’t we call a spade, a spade?
    RSD CRPS is living HELL. I fight like hell everyday but to be honest, don’t see much hope.
    Hugs to all of us whom others really cannot understand:)

  20. J M at 6:40 am

    Wow, Katie this is raw & honest…. I want to be like you. I show no rage but it’s all on the inside. Rage for what everyone expects from me. I’ve been babysitting 3 babies for 4 days- it hurts. I had to start a new full time job that’s depleting all energies- because my husband kicked me away. I’m angry but trying to overcome with forgiveness & love- it’s working but it’s all a daily struggle. I encourage us all to allow ourselves to be human- but love more than we ever have, ourselves first. Thanks for this incredible peek inside your heart. Healing & Hope are my focus words in 2017…. I am in need as well.

  21. Melanie at 6:24 am

    Just said it perfectly, my and many other f us suffering with daily chronic
    Debilitating pain.
    🙏🏼Thankyou for sharing 🙏🏼

  22. Scott at 4:17 am

    Very well wrote. I understand. Unfortunately to well.