The Emotional Roller Coaster Living With Chronic Pain

The Emotional Roller Coaster Living With Chronic Pain

By Ellen Smith

How many times have you been approached with that question and added statement” “How are you doing, for you look terrific.” Wondering how you could possibly look terrific with life turned upside down, you still decide to respond: “Oh fine, thank you”. Is this the real truth? Of course not. When someone asks, do you, too, respond that you are fine, not wanting to engage in the conversation that just might lead to more judgment? The real truth is we become excellent actors and actresses when living with chronic pain. Are we protecting ourselves or others from hearing the truth?

We have all had that experience of being asked and responding, without telling the real truth of life living with Invisible illnesses. What others can’t see many times is being interpreted as us being just fine. You get worn down trying to explain again what is really happening along with realizing, how many really want to hear the truth, so you clam up. Again, are we protecting ourselves or others from hearing the truth?

Life with chronic pain is a life on the roller coaster. We have many downs in the journey yet the simplest of life’s activities becomes our up on this rollercoaster, bringing joy when we are able to accomplish them. You don’t take life for granted, for those good moments are golden and so appreciated, until you then slip backwards again. Are we protecting ourselves or others from hearing the truth?

I am so tired of the medical world looking at me and saying I look just fine. Fine? I have had twenty-four surgeries, live with two incurable conditions - Ehlers-Danlos Syndrome and Sarcoidosis, and fight for quality of life daily. But it seems to make others comfortable to respond this way, so I save sharing the truth with those that really sincerely want to know. And to be honest, those people are few and far between. Everybody has something they are trying to cope with so I don’t find many individuals in my daily social interactions who want to hear all about what I face. For many years that attitude would hurt me emotionally and often irritate me to no end but I now realize through the years of opening my eyes to other’s reality, that life is not easy for anyone. We all try to make the best of what we have been given and hold on tight for the ride we are on. Are we protecting ourselves or others from hearing the truth?

What can you do to try to stay as positive as possible?

  • Find your peace with life - despite your struggles, find what brings a smile to your face and fills you with happiness. You may no longer be able to do much of what you could do before, but something can still bring you emotional fulfillment to help fill those gaps. For me it is writing, advocating, both about EDS, chronic pain and cannabis. I like to share the positive activities which have served to provide a positive focus for my new adaptive lifestyle. I often discuss chronic pain and the use of cannabis, sharing about life with my service dog, gardening when possible, surrounding myself with happy people and avoiding the angry ones. Socializing with toxic people is hard for me to cope with and rapidly drains me of any positive emotion.
  • Search for a form of help with pain, if possible, that helps to lighten your day. If you are having trouble finding your match, consider the DNA Drug Sensitivity Testing that will identify medications which should prove compatible with your body chemistry and thus provide some pain relief by eliminating unnecessary reactions. Until you can get a decent night’s sleep, coping with your pain may prove impossible. Rest goes a long way, so I hope you are able to find the compatible medication.
  • Remind yourself that this is the life you have to live so try not to keep waiting for life to return to how it was. It is best to move forward with whatever you have to work with or you may find yourself contributing to your own suffering and never finding the joy and happiness. Your future should not be totally dominated by suffering and misery. Happiness is an attitude - we either make ourselves miserable or happy and strong. The amount of work is the same. I choose life and searching for happiness!
  • Remind yourself that you are always an example to your children or family and friends, on how to take this challenge on. I am determined to have my children remember me as a fighter rather than a person just feeling sorry for myself. My Dad suffered with many forms of cancer before his death, but he set that example to still see the beauty of life and to continue caring about others up to the end.
  • As silly as this might read, remember we all get something we must learn to cope with. We don’t have to like it, but we can take the challenge on in terms of what it is doing to the normalcy of our lives. In order to attempt to maintain some sense of emotional well-being, we must try to make adjustments and improvements in our lives. We can waste our time and energy on “why me?” People really don’t want to be around those whose main focus in life is their illness and undeserved bad luck, so that act needs to get cleaned up or you stand the chance of losing friends you care about. This just happens to be your challenge. Too bad we don’t get to pick what it will be!

Living with chronic pain is devastating, to say the least. Try not to beat yourself up but instead seek good support, try to adapt and inject new meaning back into your life, and attempt to learn to work with your new normal to find your happiness. This is not an easy task to take on but if you ignore your new reality with all of its challenges and obstacles, you will in all likelihood, find it impossible to move forward .I find that while at times a sense of hope may seem elusive, if I find and engage in purpose driven meaningful activities, a sense of hope can be renewed and life can make sense. Yes, we got a raw deal, but so did those with spouses or children lost, those with job losses, houses damaged by mudslides, hurricanes, fires, tornadoes, etc. There are horror stories around us and there are also stories of amazing grace and determination. Let’s all try to be the success stories learning to cope with pain and setting a positive example that life still will be lived with whatever you are given. Yes, you don’t feel like the old you, but you are living your life the best you can. I wish you strength, determination and courage to take this on.

May life be kind to you.

Ellen Lenox Smith lives in Rhode Island and is a chronic pain activist and writer for medical cannabis, Ehlers-Danlos and chronic pain for 1000 WATTS Magazine and National Pain Report.

Author of:

It Hurts Like Hell! I Live With Pain– And Have a Good Life, Anyway







My Life as a Service Dog!





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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.

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Good reminder, thank you.

Maureen M.

Ellen, another great post! Thank you! It took me about 10 yrs into my world of struggling desperately with living with chronic pain and chasing the cure with surgeries and many treatments (to no betterment) and lots of changes and loss of my nursing career and close relationships before I saw the light…
and in which therapy finally led me to acceptance of my condition (not easy!), getting into tons of research and living as best I can with a positive attitude,in order to live my life with some semblance of happiness.
My life surely has been enhanced by possessing a different outlook.
Keep strong wonderful warrior!


Common in the South is the saying, ” All God’s chillin got somethin! ”
It is a truism which happens to apply universally. Hard to remember when your staring through the red tunnel vision pain leaves you with…….


This is an outstanding attitude on how to cope with pain. It is a hard way to travel to get there but it is what works. I share several points with this young lady. I have a similar background in dealing with pain. I, too, have had over 30 surgeries in my 70 years. It becomes a lifestyle few people understand and sometimes it’s from the very people we think should understand us. Life goes on, and maybe, someday we pray they will understand.


Oh, I needed this today!!

After many good days, BOOM, another flare. And less than a week before I go with my mother on a road trip. 😳😳
Needless to say, I needed a pep talk/new perspective.

Thank you, Ms. Ellen!

Lori T.

Excellent uplifting article Ellen. I love reading your posts as you are so positive to me and I’m sure many others. Just when we all get devastating news regarding a diagnosis or the inability to obtain proper pain relief, we wake up to a positive article from you, Ellen. Thank you for all that you do. Even when you don’t feel well you simply find words and ways to help others. That is a rare gift, one to be treasured. Many folks that are not chronically ill just don’t get it and if they did become ill, they would probably crumble. I wish I had half the strength you have and know I am grateful for your wisdom. Keep on doing what you are doing. You are making a difference.

Today I’m hurting bad what’s the use living if you can’t get out of pain quality of life is gone hope your happy DEA you made my life hell on earth sleep well job done God Bless you anyway

Susan Burk

Ellen I absolutely love your posts! You are such a huge inspiration to me! I’ve struggled with CRPS for 25 years and I’m working on adopting a much more positive attitude like you have. I’ve spent too many years in self pity and being stuck on the “why me?” I bought your book and love it! Thanks for all your positive posts❤️


Thank you for this. It’s my biggest struggle… feeling alone with the pain. Support would go such a long way, but I also know that people don’t understand chronic pain unless they have it themselves. Thank goodness for the Internet and Facebook to connect us with others who understand.

I struggle with believing that people who don’t understand also don’t CARE. Sometimes that may be true, but not understanding and not caring are two different things. I guess that we bring on a sense of helplessness from others who do care — what can they do, what do we expect of them?

Listening would go a long, long way. Or just saying, “I care about you.” That type of relationship is rare, and it’s easy to over-draw from it. There are times when I get that type of response and I feel a sort of hunger that comes from a place of deprivation (of being deprived of… a connection, I think) — someone cares! It’s not that we are seeking attention or that we’re needy. Well, yes, we are needy and we just want to be reminded that we’re valued.

There’s a book I want to read called “Lost Connections.” It’s a new release but I think it might shed light on some of this loneliness we feel. I wonder how I can re-connect with people in meaningful ways but maintain that balance of sharing… but just a little, not too much. Or if I’m just setting myself up to get hurt, as often happens.

The pain and fatigue and cognitive issues chip away at our “personhood” — the person we used to be, the person we want to be, the life we want, how we see ourselves and how it’s the times we struggle that jump out at us in our grief. I am not Me. But… I am. And I’m doing my best with what life has dealt me.

… but pain is isolating and I wish I wasn’t as alone.

This article is a good reminder for me to reflect on, so I’m saving it to re-read whenever I need to. It reminds me that the problem isn’t me and that I’m not damaged. I am sure I can find some balance in life. I have read that practicing gratitude can help. I’ve read about keeping a gratitude journal. I also think keeping a “success” journal is important. If I get 5 dishes done, that’s a success. I don’t have to do a sink’s worth of dishes to have made progress. Little successes add up. Thank God for that.


Ellen, thank you so much for your right on article. Every single point you make is valid and being people who live in pain know it to be true and imperative. Maybe some of you can relate to the present opiate cutbacks that are being made as near as I can figure strictly for our own Goods and the emotional impact it has had. Maybe some of us we’re doing Fair without the government involvement but now are left with what amounts to needless torture. Your ideas apply well to deal with the resultant emotional Wasteland. Perhaps others have more ideas about how to cope mentally with it. Most counselors have only and ambiguous ” oh that’s interesting ” to offer. Thanks again for the pragmatic and oh how timely article. Steve


Thank You for Your gift Ellen : Bless Your heart!