Going Backwards, Once Again, Living with Chronic Pain

Going Backwards, Once Again, Living with Chronic Pain

By Ellen Lenox Smith.

Living with chronic pain can prove to be physically exhausting and, at times, emotionally overwhelming, to say the least. For years, I have been coping with two incurable conditions, sarcoidosis and Ehlers-Danlos Syndrome. Unfortunately, one symptom of EDS is the incapacity to metabolize many medications. In my case, this would translate into years of untreatable pain.  It took years to find my two compatible pain relief medications and strangely, both turned out to be considered controversial, cannabis and ketamine. Medical symptoms such as pain must be adapted as some periodic roadblocks but not permanent obstacles to seeking purpose and meaning in one’s life. But one thing I keep having difficulty working work with emotionally are those bad days that hit that are so intense and disruptive, arriving after a better day or two that fills you with hopes and dreams. It becomes hard to try to remember the good and the hope you want to hold on to, which seem to rapidly get erased from my mind. So, down that emotional tunnel I fall. As patients with chronic disorders, we must learn to be kind to ourselves. We need to accept limits exist in our capacity for suffering. Acceptance is not surrender. Acceptance is patience. It may mean temporarily leaning on our support system without feeling weak or inadequate.

Ellen Lenox Smith and friend

Ehlers-Danlos has a habit of taking you on a journey of constant surprises. You no sooner get past a subluxed or dislocated joint and thinking you can relax and move forward again, and then it happens, usually with no warning that something else decides to become an obstacle. I struggle more than ever with the backward spiraling. It deflates you both physically and emotionally. I have to not only cope with the new medical issue but also with how I can make myself snap out of the heartbreak, knowing that there will not be a quick fix. I am grateful to have those occasional better days, but the regressions particularly following a series of good days are my greatest challenge.

Recently, Stephen Hawking passed and I happened to catch ten quotes he loved to live by, that so touched me. One is: “However bad life may seem, there is always something you can do, and succeed at. While there’s life, there is hope.” Stephen Hawking’s inner strength and perseverance may be well beyond the human capacity to measure these qualities. While those of us functioning in the normal range of human existence should never have to measure our productivity and emotional adjustment to Mr. Hawking. We can, however, make every effort to try to emulate his efforts which appear to have brought him a sense of self and produced an astonishing connection and contribution to human development. This man suffered for years with ALS yet look at all he accomplished in his lifetime!  While suffering one of the most debilitating of conditions, Mr. Hawking became a giant in his field. It was not his brain that drove him to be a productive member of society and giant in his field but his attitude. Few of us can hope to compare our lives’ accomplishment to Mr. Hawking but all of us can work to try to adopt his attitude. For me, my service dog, my support system of family and friends, exercising to try to keep muscles strong and writing are wonderful outlets. I need to hold on to on those especially on the days I slip backwards. And, if the day is too difficult to accomplish what I want, then I need to not beat myself up but let the day pass remembering there will be a better tomorrow to go back to, allowing return to those things I can still do and love.

He also stated: “People won’t have time for you if you are always angry or complaining.” I have seen those with the negative attitudes pushing others away. We have had that happen in EDS support meetings, meant to help educate and empower each other. When someone arrives and dwells on sharing how they are worse than everyone else, despite us not seeing this as a competition, and sometimes even deciding to interrupt a speaker, they have to be spoken to. It is not pleasant to have to address this but it turns others away and isolates that person acting like this. I know we want to shout out to the world on those bad days - “we are hurting, know what I am going through” - but that only turns others away. We have to be selective as to who we open up with.

And my favorite quote of Stephen’s is: “Concentrate on things your disability doesn’t prevent you from doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physical.” What wonderful words to live by and how amazing despite his severe limitations, he could believe and live by this motto. It is a battle emotionally to achieve and then maintain this attitude in life. But we all need to remind ourselves that if Stephen Hawking could live by these words, that we, too, must work on digging deep for that courage and determination. No matter how things regress and let you down, we do still have that life to live and not waste. Yes, we mourn our losses but have to remember to also celebrate what we can do.

I am not going to say this is easy to accomplish. It took me a good year to begin to even accept my two presently incurable conditions, find things I could do and provide purpose and meaning back into life, not give up and continue to search for answers. It becomes a daily battle to stay positive. But, after thinking about what a person coping with ALS faces, it reminds me that although life can be a difficult challenge, I am still lucky to do as much as I can with my “new normal”. I will always miss the past - walking, swimming, lifting, hugging, running, etc. but I have a life to live despite these loses.

When those backward days hit, I want to hold in my heart those quotes from Stephen Hawking. He maintained courage and a life with purpose and meaning despite having to face tremendous loss. Days will continue to be forward and backwards, but my attitude will be what makes them more bearable. I will try to not to allow myself to be disabled in spirit. May we find the emotional courage to not drown on these days that let us down and push us away from hope and determination it takes to live life with chronic pain.

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.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

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/

newest oldest
Notify of
Kathleen Kaiser

I enjoyed your article and was particularly interested with the quotes that Stephen Hawkings lived by. The one that caught my eye the most was the one that said “However bad life may seem, there is always something you can do.” This quote reminded me of an experience I had when I was working as a para in a high school. One day I was working with a group of kids and we were making pudding with whipped cream. But we were making our own whipped cream, “Not Cool Whip.” One of the kids that was there to help had many diseases that did not allow her to walk or move her hands or arms, she was also mentally handicapped and she was in a constant state of spasms and in a lot of pain because of them. Because of her limitations there was almost nothing she could do to help with this project. I had managed to utilize every one of the other children to do some kind of task in making the whip cream. And then suddenly as we finished up it dawned on me the one thing I knew she could do was to eat. So she became our official taster. And I’ll never forget her words when I fed her some whipped cream, she said “it’s perfect!” When she said this all of the other kids applauded. That may sound silly or insignificant but it was a big deal for her. She tended to be a very sullen person who would often fall asleep in class or just not communicate with her classmates.

Mary Lenz

Im now off opiods but live in a state where medical marijuana is only approved for children with seizures. Unfortunately, ive ben prescribed opiates for my chronic pain and PTSD. Im now off of opiates Ive weaned myself off much to the pleasure of my dr. Im now on zubsolv for pain and thats it. It helps to cut my pain from 0 to 10 to 7 to 10, good but opiods gave me 9 to 9.5. Good but not great.


To all chronic pain patients: There is a Nationwide “Don’t Punish Pain Rally” taking place Sat. April 7th, 2018. Most will be held at the State Capitol . However in Texas it will be held in Dallas, not Austin. If you are physically able, I strongly encourage you to get out & support this cause.


Thanks for a beautifully written and thoughtful article. I understand completely what you’re saying. I was thinking about the negativity and complaining that you said comes through so often. You know if my only worry in life was just about dealing with my
diseases and how I
respond to this constant pain, I think I could deal with a much more positive attitude. Having been on opioids for over 15 years (RA & fibromyalgia) I did climb
out of depression and was finally doing the things I could do and not getting so down on the truly awful days. I had my full meds and my life was fairly normal for a chronic pain patient. When my pain doctors started taking my meds away, explaining to me that what I was taking had to be cut back due to government crackdowns. This is when I started going off the rails! When you hurt so bad and know it’s only going to get worse. I could no longer think about going to visit a friend or taking a walk, playing with my dog, or cooking a meal. My condition AND my attitude went downhill. From what I’ve observed people who are “complainers” aren’t complaining because they have a pain condition to live with, they’re venting towards those who have literally ruined, what once were fairly happy & productive people in the chronic
pain community, who now wake up everyday to face awful pain and know it’s not necessary!
I still remember a time when we did smile and
not “complain all the
time”….. But knowing what’s being done, on purpose,to such a fragile group (the pain community,) is beyond my understanding.

Maureen M.

Ellen, Thank you for such a perfect way of expressing how we live our lives with set back disappointments. I am forever disheartened when they regularly hit me also. I try to pace myself but when a good/better day comes around…I tend to get busy, busy, busy and ALWAYS crash in increased pain by the eve and into the next day…or week!
I, for one, have no ‘in person’ support system whatsoever so on days when I feel better… I have so much to do, to catch up on and so off I go! Always knowing that I will suffer more later on.
The Hawkings quotes are great! Hang in there warrior. May we focus on our blessings.

Kristen Kennedy

Thank you Ellen for writting this artical.I am also from R.I.and I think it was a few weeks ago I read your other story that was very encouraging just like this one.I am struggling today like so many others and my pain is at an all time high where I couldn’t bring myself to get out of bed.I have been a chronic pain patient for years and like so many others I too miss doing the things I once enjoyed.I also was recently diagnosed with cancer and just had surgery a week ago today.I am also holding onto resentment for the way I treated at a Hospital here in R.I. after my surgery I was given shots for pain but the following day I was told by the Dr,not my surgeon that he didn’t want to give me my pain meds! They are written clearly in my chart as to what I am prescribed daily.I know this is going off the subject but I couldn’t seem to get past that.I did say some things that weren’t too nice but I felt like this Dr was labeling me as an addict and I spoke up loud and clear.Long story short I ended up signing myself out against Drs orders just so I could get home and get my medication to relieve pain.Its very sad we pain patients and Cancer patients etc are being treated this way.Finally after reading your story I was able to snap out of the resentment and reminded myself that tomorrow is another day and no matter how much pain im in my plan is to do something small at home .It may be as simple as emailing a Friend or reading a book but im gonna try and do something rather than stewing.Thank you again for another powerful,uplifting story you wrote and I wish you all the best!

S. Dixon

Good article. Very good points concerning what we deal with daily.

Katie Olmstead

I particularly LOVED the line about not allowing oneself to become disabled in spirit. This is the juggling that we all face…how to accept the hard days with grace. I know I push myself to be physically active and do a lot of volunteer work to promote the communities I am part of, and then I may well pay for it. It is, indeed, hard to be patient through the more painful days. I am particularly bad at cancelling something I had planned on; I push through and that’s not smart. I would never wish chronic pain on anyone, goodness knows, but I also have learned things along the way in my own 20 year struggle. I try for gratitude, grace, patience…and distractions. Like petting a cat and reading a novel.

Alice Carroll

If Medicare decides to not pay for opioid therapy for any chronic pain patients (except cancer) there will be a lot more of us (1.6M) trying to get through each day keeping our spirits alive and not sinking into depression and hopelessness. Our government is hoping that Big Insurance will step up to cover alternate therapies like acupuncture and massage but at this point I’ve not heard that is in their plans. This seems like a horrible way to treat those in chronic pain who have benefited from opioid therapy. Many of us have been through massage and acupuncture with poor results. What about going through withdrawal? What does the government have in mind to help those in chronic pain deal with that? We need more information on this. I hope the National Pain Report is advocating on our behalf.


What a lovely article. Thank you for writing this. The fact that chronic pain patients fight like hell to try to feel better and that physicians currently are not wanting to prescribe adequate medication for their patients any longer due to the “opioid” scare. It’s not pain patients with addiction problems, it’s those addicted to heroin who are overdosing the majority of the time. Why does the government combine the two? Now, there just may be an increased suicide rate with patients who are in pain and cannot get the adequate medication to control their pain. It is such a huge problem right now in the world of the chronic pain patient. This is what happens when the government tries to control something. Everyone jumped the gun, told doctors to quit writing pain medication prescriptions, insurance companies are denying coverages for this medication or limited doses. This has turned into a much larger problem than before. Chronic pain patients are NOT to blame for the drug addicted.


It seems with most pain management issues that I read about, pain may well be continuous but, it does vary in intensity. This variance can give you hope for a short while, a few days that maybe, just maybe it will not come back as intense as the issue can be. When it does, this causes an emotional roller coaster at least it has for me for over two decades. It is difficult to remain focused as you ride the roller coaster. It can break even the strong willed. As a business owner/operator for 37 years until recently, I thought I was emotionally as strong or stronger than anyone else with over the top continuous pain but, after a couple of decdes even with adequate pain management , pain has finally wore me down. I jsut can not do what I used to could. I have witnessed great athletes recover from very serious injury and continue to compete. Mind over matter?

I will never believe that placing all patients in worsened pain by limiting pain management therapy, medication if that is what is neccessary to gain the upper hand on unfortunate drug overdose makes any sense at all. Since statistics,numbers, records, and documentation are so important to dot/gov agencies, then why was personal documentation of a patients pain management issues that shows benefit of medication as the last effective therapy for Many patients not considered before setting a maximum, inefficient dosage of medication for one and all? Dot/gov thinks “we don’t mind if you are in worsned pain so, it
don’t matter”.

Look online for “kratom”, cbd oil. Prices vary but, it can become significantly expensive with sustained use….if it works 4 u.

Thank you once again Ellen for a wonderful story. Also serving as a reminder that it’s best to keep one’s voice silent when it comes to wanting to share with others what they may be going through. Some folks aren’t blessed to have a family, children, pets, or a “support group.” When they indeed finally had the courage to share their story they were either analyzed or criticized. Others ALWAYS knew what was best for them! Often times without even asking. Instead of just listening and being supportive they were quick to judge, silence them or turned their backs all together. Perhaps this is the case with your support group for those that are horribly dreadful and have to be silenced. I would think that’s what a support group is for, to listen to ones story no matter how hideous it may seem to others. Apparently it’s very important to the one who found the courage to share their story. I remember well taking the time to listen to others, handing them tissues one after the other. Listening for hours on the phone until their voice became silent then offering all the support I possibly could. It’s a hard story learned when one realizes it’s a one-way street. One that will stick with one for the rest of their life. Indeed Stephen Hawking, his disabilities and accomplishments are excellent examples of how to be a giant when one’s world appears to others to be so small. Courage is a mighty thing, though it can be obtained and kept with God’s help.

Ellen Lenox Smith

Lawrence - not sure what state you are in - kratin can be checked online and CBD oil is wonderful for the body but you might need to turn to a cannabis oil that also has THC in it to help with your pain - just a thought. If ordering either one online, be careful to check them out for quality control.


Thanks 4 sharing u r story.I totally understand. Being in bed most days4 years, I will get a good day, it’s so exciting then I will have a bad month. Instead of getting discouaged I thank God that I have any good days, some people have none. It took me along time to accept this trial. My faith in God & prayer books help me. Thanks 4 sharing what helps u. The last post someone asked price of CBD oil it runs about $80 but I find it very helpful.

Jim Moulton

This is an excellent article, the Quotes by Stephen Hawkins are very encouraging. You can’t let yourself be disabled in spirit. There is a Bible verse that says, It is the Spirit that quickened , the flesh profited nothing. Thanks so much!!!


how much is kratim and cbd oil i was taken off pain pills docs are scaref


Beautiful. And I needed that! Thank you!