See Me, I am Still Here

See Me, I am Still Here

So many, living with chronic conditions, must learn how to cope with isolation, pain, loss of careers, surgeries, financial losses, medication they can’t afford but need. As is this being not enough, the chronically ill often feel a sense of irrelevance, due to the often-unintended consequences of friends, family and the medical field if our condition requires that we focus our energies on ourselves. Thus, we are often left with little meaningful engagement in the issues of others, out of the misguided assumption that we need to be protected. Nothing could be further from the truth as the chronically ill can develop unique insights which can prove incredibly valuable. The chronically ill do not need to be treated with kid gloves. We have been toughened by our experience. Indeed, patients suffering from chronic conditions do not need to feel irrelevant. We have much to offer and feeling left out of the mainstream of life, though often well intended, is therapeutically harmful. Yes, I mean that we are at times treated by those that care about us like we aren’t here.

That may seem like a strange statement, but have you also had the experience of learning about something dramatic happening in the life of someone you care about, and you had no idea since it wasn’t shared with you? The comment I get back when I am shocked to not have known something was going on is: “You have so much going on in your life so much worse, I didn’t want to burden you.”

Burden us? I am not one to compare my issues with others and make mine sound so much worse. That is not the person I am or ever want to be. So let me and others back into your life, stop thinking protecting us is key for the kindest thing to do is to return to including us! I know you mean well and don’t want to hurt us or make us feel worse, but that is what happens. Your consideration towards us does hurt, despite your positive intentions.

Please know, we do care and need to continue to care about others, despite any struggles we are going through. When you don’t include us, then we don’t feel like we are really existing on this earth. So, open your hearts back to us, include us in what you would have normally shared and know you are helping us to engage in life and feel normal. For, it is very important for us all to interact with compassion and thus feel human. Nothing could be more natural and human than genuinely caring for another human being. It feels good to care, to offer support and to feel alive when one still shares with us. And yes, it feels good even if we are struggling with our own issues. The human tragedy is more often not a part of the human condition. Let us not make assumptions about those suffering from chronic conditions. A good deal of meaning in life is a result of sharing our trials and tribulations. The chronically afflicted should not be denied this critical human experience. Who isn’t trying to live life and not experiencing difficult issues?

Navigating life with a chronic issue is no picnic. You learn to dig deep after mourning and then pick up the pieces and find a way to still have purpose and meaning in life. So, help us with our journey and stop worrying about bothering us due to your issues not seeming as difficult or painful. We want to be there for you – so let us show you we do care and know it helps us to live our lives knowing you still value our friendship.

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

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Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Claudia

Kristine…oh how I feel you I can’t start my day w out my w prescription .i fight I am 😠 everyday I WORK out and let it go at the Gym .cant give up no way .the fight the war on drugs is so real I blame the CARTELS why punish us .. I can’t function w out. I can’t lay around all day my muscle get tight and the pain is worse THEY love to cut 5 cervical and 2 back looking at the 3rd but I am fighting for my life .and DON’T EVER GIVE UP

I have a friend who only calls when she wants something. I have chronic pain and she just does not understand what it is like to have pain all the time and not be able to get away from it. She had a little treat of it recently. She broke her arm and then complained to me that it hurt even with opioids. After her surgery , when she went home, a few hours later the nerve block wore off. She told me that she panicked because it hurt so bad and called the doctor to get help. While on her meds during her recovery she said it hurt sometimes. I told her “Imagine not being able to get away from your pain and having it every day . Imagine having that severe attack on top of your regular pain and not being able to get help at the ER. Imagine not being able to escape it not even for a little while, I live that way all the time.” A look of horror crossed her face in that moment. Now she does not call unless she wants something.

HI Ellen, This is one of your best posts yet! Thank you for putting my own emotional issues and anguishes with friends and family into words.
I live alone. I have 4 siblings in the same town and rarely see them. But when I do it is usually because I am coming to ‘their’ rescue and helping them. I am the oldest and therefore I am the one they go to but…. It’s rarely the other way around. Ugh. I cannot ever depend on them other than if I really really can’t get to the food store. Which is usually exhausting and agonizing to take myself to the store or appts but ‘I have to do what I have to do’ and then collapse when back home. It’s my life, it’s a limited and lonely one, and I’m used to it. I count blessings and have stopped trying to get others to understand.

Yes, so much yes! As if having a chronic pain condition isn’t isolating enough, well meaning people inadvertently isolate us more trying to “lighten our load.” I want to be part of the lives of others, share in their experience, that ability does not disappear when our chronic illness appears.
I also love that you talk about mourning. After a couple years of getting sicker, test after test, specialist after specialist, I finally saw a rheumatologist and was immediately told that I have fibromyalgia. While I felt relief at finally having a name for my myriad of weird symptoms, I have also been experiencing grief and loss that I will never feel like my “old self” again. It is so important to me that my loved ones believe that while I may not be able to do everything I once did, I am still fully present in their lives. Having a chronic illness isn’t just an adjustment for the person with the diagnosis, but for their friends and family as well. Thank you for sharing your experience with us.

Granny

Great message. It is easyy to feel invisible iin the grand scheme, especiallly after having an impressive impactful csreer snd rsisiing s big family… It is like dyingg twice, while the shelll of you is waiting arounnd to die. Not goood. We have more to give, we just need to be able to giive it when our health alllows. Requires patience, understandiing and acceptance of us just as we are.

David Hickle

I don’t care who said that they are still here they aren’t me I hate Ohio and USA I’ll never again trust Ohio and USA anymore I’ll be fleeing and leaving Ohio and USA because of the criminal actions against me that Ohio and USA have caused me living in Ohio and USA is not worth living a criminal actions against me or the attrosities of a living breathing nightmarish hell I utterly hate Ohio and USA Ohio and the entire USA has betrayed me for over 38yrs of my entire life so now I’m just [edit] done with Ohio and the entire USA I just don’t [edit] care anymore I utterly {edit] hate Ohio and USA oya Ohio and USA is nothing but a [edit] criminal terrorist that failed me and ruined my life and I’ll never again [edit] forgive Ohio and USA for their criminal actions against me

CathyM

This is a brave response to chronic pain, and yet I know too many who are indeed withdrawn into themselves and seem not to care at all about others. I have chronic moderate pain, and I try to make a point of asking others about their lives and trying to be involved, even if it’s just sending a card every now and then. But many who are ill have responded to the overwhelm by focusing ALL their attention on their own lives, and who seem angry if I try to talk about other things…they “proudly” (?) declare that they have no energy for anything but managing their all-consuming situation. So please don’t blame friends & family for not sharing with you – they may have been blasted by someone else when they shared about themselves, and have “learned” that the chronically ill or in pain have no attention to give. I’m not sure how to address this conundrum, except perhaps as you have, by telling those around you that you’re still interested in their lives.

Ronda C.

Powerful words, and a reminder of the benefits of telling others what we need in a positive way. Thank you for sharing.

Danny

This is so true. I had always been socially active and had many friends, even after my accident. At least up until my wife’s job transferred her from my hometown in Georgia to North Carolina. After 6+ years, we came back home to Georgia. Just before, one of my closest friends of over 30 years passed away. Then, after coming home, a year and a half ago, my best friend since childhood, 50 years worth, also passed away. I had no idea how much their deaths would affect me. Both of them were always very concerned about me and constantly called to inquire about how I was doing. But after they were gone, the phone stopped ringing. Others I considered good friends didn’t have the time or inclination. Now, suddenly I am so isolated and alone that I find it very difficult to get out of the house to do things. Not coincidentally, my pain had increased in intensity and frequency, as has the depression that accompanies severe chronic pain. I have been caught totally off guard by this development and am not handling it well at all.