My Story: A Chronic Pain Patient Talks About the Pain of Loss

My Story: A Chronic Pain Patient Talks About the Pain of Loss

By Joanna Mechlinski

Joanna Mechlinski

Joanna Mechlinski

Recently my co-worker Kim passed away from leukemia. We were devastated, of course; but even more, we were shocked. Kim was a fighter. It was her second bout with the disease in three years and she’d beat it before. This time things seemed to be taking a bit longer, but it was understandable, given the toll her body was under the first time. But Kim had undergone a long-awaited bone marrow transplant in June and things seemed promising. If there were days I would text her and it seemed to take a long time for her response, I still didn’t worry. After all, there are always setbacks on the road to recovery, right?

So it was a horrific shock the Sunday morning another co-worker called me with the news. I literally could not wrap my brain around it. How could the always laughing and active Kim, the one I had just sent my usual text messages to, be gone? She was only 56 years old. She was supposed to get better. All of this was just a small setback against the big picture of her life.

At work the following week, the bleak atmosphere was almost tangible. Employees tried to console each other as best they could, of course. For days, I kept hearing people say things like “She’s in a better place” and “She isn’t suffering anymore.”

This really set me contemplating. Lots of people – too many people, really – experience serious illness during their lives. Some people, like Kim, experience it intensely but during a limited period. Others, such as myself, might often feel like they’re about to die from pain or other symptoms, but they know that isn’t actually the case. Their suffering may last years, even decades. Why? What’s the difference? Is it preferable to be faced with a life-threatening disease but to know that if you beat it you’re likely to be done with it? Or is it better to endure a myriad of symptoms for years without an end in sight, but know that you’re likely to remain alive?

What does it say about me as a person that I’m even mulling the pros and cons of two scenarios that most objective individuals would consider equally horrible?

In either case, many people I know have expressed the belief that there is a purpose behind it – a purpose behind just about everything that happens. Usually this is grounded in some sort of faith; but sometimes it’s not. Sometimes it may just be the very human need to make sense of things, to believe that our suffering isn’t worthless. We can make it through whatever life throws at us, if only we believe it’s helpful to someone in some way, be it inspiration, consolation or anything in between.

Yet religious or not, I believe just about all of us dealing with chronic pain have hoped for a miracle at some point. Whether or not we would actually admit it aloud, it’s an understandable wish. Who wouldn’t want their old life back, a life where you could move freely and live your life without being limited by pain? Being told that there is little or nothing that can be done for your condition is difficult to believe.

I don’t claim to have the answers. But the good news is, neither does anyone else. We are all free to believe whatever makes sense or gives us comfort. Even better, we are free to change our minds about what we believe at any time. Who knows? Maybe the purpose is whatever we need it to be.

Joanna Mechlinski is a former newspaper reporter who now works in education. She is a lifelong Connecticut resident, avid reader and animal lover who has battled several chronic illnesses since her early twenties.

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Authored by: Joanna Mechlinski

Joanna Mechlinski is a former newspaper reporter who now works in education. She is a chronic pain sufferer who lives in Connecticut and is a frequent contributor to the National Pain Report. You can follow her on twitter @castlesburning.

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I think this article describes very well what most people with chronic pain feel but are often afraid to express for fear of sounding selfish. I have suffered from severe pain for more than three decades after prolapsing my first disc at the age of seventeen. I now have multi level disc degeneration, osteo arthritis in just about every joint and just to put the icing on the cake have now been dealing with fibromyalgia for at least 10 years (since diagnosis anyway!) I haven’t had a single day without pain since I prolapsed that first disc, and now life is a living hell of burning hot pain. The pain I suffered when in labour, when I had a ruptured ovarian cyst and post hysterectomy surgery was bad, but was nothing compared to what I live with now. And at least I knew those pains would go away. Nothing is guaranteed with what I have now. Analgesia has little effect. I used to be terrified by the mere idea of death, afraid of my own mortality. I’m not afraid anymore, because I know that will finally be an end to my pain. I may be considered selfish by some, but unless you’ve been there yourself you really can’t understand that with severe pain you really don’t ‘Live’, you just survive from one minute to another and hope that perhaps you’ll get a slightly better day tomorrow. Both of my Grandmothers lived well into their 90’s, and it terrifies me that I may only be a little more than halfway through my life. I spent most of my career nursing elderly patients, and regularly cared for those with terminal illness. Most of those I cared for had good pain control until the end, and it was the fear the of dying that caused them the most distress, and the worry about what would happen to those that are left behind. When suffering with this sort of long term chronic pain there is no end in sight, you worry about the impact your condition is having on those around you and feel that all you do is make your loved ones miserable too. Both terminal illness and chronic pain have major impacts on life. At the end of the day they are very different, but both have a major impact on the life of the individual. I’m sorry if people do feel offended if sometimes we feel sorry for ourselves, but unless you have tried to live with this sort of pain every single moment of your life you really can’t understand why we sometimes feel that life really just isn’t worth living anymore.


Sorry for your loss and thank you for putting into words what I’ve been trying to communicate for some time.
No matter what the decision, is life with constant unrelenting 10/10 pain really a quality of life? Sadly, we treat our four legged companions with more dignity if they were facing the same suffering. We would not for a moment allow them to suffer.

Gail Webb

I, too, have had long struggle with fibromyalgia….26 of my 51 years. I have had acute illnesses as well as other chronic problems. Three times in the last 8 years, I should have died but did not. I decided I was too used to chronic pain to be aware when something should actually kill me. I always had the attitude of “I’ve been through worse and I’ll be fine!”

Jean Price

Joanna…your article touches on something of an equalizer in life, and something we all face…our own deaths and the deaths of those we care for. Truly, those of us with life limiting pain usually have a different perspective on life…and death…and all that lies in between. I look at many things in life as “its”, they are merely consequences of the laws of nature, body mechanics, physics, even energy and mass. My initial back injury was an “it”…caused by years of micro injuries from lifting heavy patients, (especially when my blood sugar was low because we had skipped dinner to care for patients), climbing on carts, carrying a child out to the side of my hip, my body shape, and other seemingly innocent activities or situations. There was no purpose, in my opinion…it just was the consequence of all that had come before! YET, because of my faith and life beliefs, I could allow this “it” to have a purpose, grow from it, help others because of it, become stronger despite it, and find a way to resurrect my life within the boundaries of “it” and my physical limits and endurance. We all get the choice to do this at some point, I think…yet no one does this all by themselves. We need support and need to find our own affirmation and educate ourselves, and try and fail and try again! And we often don’t do it gracefully, but that’s not the goal! The goal is the same as for others who don’t have pain…to find as much joy and do as little harm and to love ourselves and those who are in our lives and in this world. Most of us understand our pain will be gone with either a miracle or death. And we keep holding on for that miracle, as best we can. For ourselves, for our families, for our friends, for those who know our lives matter….and we are whole and healthy within the framework of what’s happened to our bodies. Our personal views of death also influence our lives, I think. I saw this time and again in hospice, some wanted to die, others were ready to die but were going to live life up until they did die, and still others wanted so very badly to live that they looked at death as a failure. Some were peaceful, some afraid, some excited by the adventure. For me personally, the length of my life is God’s job…my job is to make the most of all my time here, and that’s harder some days than others…and definitely harder with pain. My family and friends will grieve my loss, yet they will know I’m no longer in pain…and they have promised to be grateful for that! I know I will be! Thanks for touching on this with your article. I think it’s especially important to create a dialogue now with so many being undertreated for their pain and finding it hard to see life as worthwhile. It… Read more »

John Vineyard

I love your story Joanne, so sorry for your loss but very good way to look at it.

This is just my opinion on the subject of pain versus illness that can kill you. I have lived with fibromyalgia since being diagnosed in 1996 and it has always been a Battle. I had a back injury in 1992 with 3 fusion surgeries after. In 2009 I was in a head on collision at 60 mph thanks to a drunk driver causing multiple trauma and nearly died a few times in the following month in ICU. Needless to say, I have a whole new idea of what a 10 on the pain scale is. Now this is just my opinion but personally I can deal with the lifelong pain even though it’s much worse now. What I couldn’t deal with was the near death sickness for even just a month. I had a ruptured spleen, damage to my colon, developed an abscess after spleen removal, got a collapsed lung from draining the abscess and then developed a sever Ecoli infection that I bearly survived. At one point I prayed to die until I thought of my wife and kids then decided I could fight a while longer.

I know every one of us is unique in how we handle things, but knowing what both sides of the argument feels like, I’ll take the pain. I know someone else going through the same might take the sickness, it’s all about who we are as individuals and how we feel about what we’ve been dealt. I see my experience as a chance to help others and hopefully give inspiration.

Thank you again for the wonderful story.

John Vineyard
US Pain Ambassador/Advocate for New Mexico