Remission Impossible

Remission Impossible

By Cynthia Toussaint

Losing my lower body remission in December has been devastating, but I keep my chin up as much as I can. Despite that, and despite what many people tell me, we with high-impact chronic pain can’t think away our fallbacks.

Cynthia Toussaint

As many of you know, I lost my partial CRPS remission after nearly nine years due to my western doctor putting me on excessive doses of cortisone and antibiotics when I got very ill late last year. Perhaps worse than the remission loss has been the near 10 level pain most every day since.

As you can surmise, this is one of the most challenging times of my life.  A big part of that is my fatigue at hearing people say I look too good for this hell. So when I accidentally caught a glimpse of the above image John took while I was writhing in pain in the ER the night this whole damn thing started, it was like BINGO – that’s how I feel! I’m just used to faking it to make everyone else comfortable.

Worse yet a number of friends don’t want me saying that I’ve lost my remission. Perhaps this is due to their sadness for me, not having the stomach for a friendship if I’ve physically returned to where I was three decades ago or thinking my remission loss is too close to home, contagious if you will.

Recently when I reached out for moral support, three girlfriends scolded me for using “those powerful, negative words.” Others have told me to meditate my pain away or be grateful for the character-builder this “hiccup” is providing. Most stinging, one friend told me I could make the pain go away by not thinking about it.

Don’t get me wrong, I know these women want the best for me. But denying my lost remission, while making them more comfortable, hurts and keeps me in a place of perpetual phoniness.

It’s been three months. I know my body and I know my CRPS. After 35 years of living with this disease that makes its own rules, I’m feeling it shifting again into the abyss of how-bad-will-it-get?

Last week, when I shaved my kicking laps down to six (from 72), I was in so much pain I got out of the pool shaking, barely able to walk. A long time gal pal shouted, “You just have to think positively!” With that, a realization sparked.

Perhaps these well-meaning, loving women just feel so damn helpless they don’t know what to say. Like all of us with long-term, high-impact pain, I’m not expecting anyone to fix me. The biggest gift someone can give is to allow me to speak the truth and listen compassionately. That’s how a friend can help me accept what is – and begin to move forward again.

On Sunday, I was able to hobble to church where I was surrounded by a loving community. The folk there had noticed my absence and inability to stand. Twice I fell into the bad, old habit of sharing my circumstance with the capper, “But I’ll be fine.”

They wouldn’t let me get away with it. They countered, “You don’t know if you’ll get back to where you were, Cynthia. You must be terrified.” That’s when the hugs and real conversation began.

Remission impossible? For now. I’ll keep you posted…

Cynthia Toussaint is founder of For Grace, a Los Angeles-based non-profit that works on issues facing women in pain. She is also a frequent contributor to the National Pain Report.

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There are 29 comments for this article
  1. D'Ann Jacobs at 3:07 pm

    I am sorry you lose your remission. Its horrible the way people treat us. Maybe its their afraid, not educated or too uncomfortable with someone being different from them. It’s sad but a fact of our reality. I have lost many friends and family members when I was first diagnosis then made friends through a support group, I participated in a clinical study with Neridronic Acid Infusions and within 5 months went into remission. When this happened I was so excited! But again I lost all my support group friends. It’s been a roller coaster ride with friends. I have been blessed by meeting and now having two very close and loving friends that aren’t afraid of CRPS and just love me for me. I pray constantly that I stay in remission as I miss my career so bad. My faith is very strong or I would not have come this far. I will keep you in my prayers and never give up hope. You were in remission at one time and its possible to go into remission again. You never know so stay as strong as you can and continue to be an inspiration. God Bless you.

  2. cynthia o. at 5:08 pm

    i would just like to ditto what Emily Miller said. You have always been an inspiration. i always read your posts, take them very seriously. i am so sorry we all suffer so much…you are always in my prayers.

  3. Emily Miller at 1:12 pm

    Dear Cynthia, You have been an inspiration to me and will continue to be. Having chronic pain since 1985 I can sympathize with your ups and downs. Don’t ever give up hope that things will improve. I view my situation as if it were a wheel
    Of fortune When it’s down believe that it will eventually go back up again and when it’s up
    Rejoice. There are two constants Change and Gods unconditional love. You are not alone. You are blessed with a supportive spouse and lots of followers who love you. You have survived so much and will survive even this situation. Courage. much love. Tutu Miller

  4. Maureen at 6:15 am

    Cynthia, I am heartfelt sorry for all that you have been/are enduring. God help you and us! I recently snapped a pic of myself lying in bed in writhing pain, just to see what I must look like. I wanted to send it to all of my family and friends. They have no idea the sufferings I go through all alone. But I did not. I sensed that it would’ve only sent them further away from me.
    I did share it with my Pain support group though, for they do understand! 🙂
    I’m living in Fla. 2 yrs now, to be closer to 4 of my siblings/families for help and support. By the way, I rarely see them!! Bad move for sure!
    My move set my body back immensely and I’ve yet to recover from it. I sense that I never will.
    But, before I moved from CT. I was able to go to church (most weekends) and belong to a home fellowship group. I was blessed to get to know the love and comfort of God’s people, even if they had nooooo idea what I truly experienced with my pain issues.
    The point is…it did not matter to them. They knew that I ‘suffered’ and that was enough for them, to put out true love,care and concern to me, to bring me meals and not stay too long, to call and check on me, etc.
    I appreciate them even more now.
    Keep strong. I wish I could take your pain away. Maureen

  5. Bruce Stewart, 56, peripheral neuropathy at 7:08 pm

    Seems like you should go easier on yourself. Quit giving these friends power over your emotions. The bottom line for all of us is that we can’t keep up with normal people, and their approval will never be forthcoming, we’ve all experienced it. Maybe some of your approval seeking has to do with when your illness occurred, you were in your early 20’s to hear you tell it, a delicate time for seeking peer approval. I was almost 50 when my illness presented itself, and I could live without approval or empathy just fine. I always feel especially bad for young people with chronic illness. And I feel especially bad for you, Cynthia. You’re still a young woman longing to get out of a tortured body, and now your soul is tortured along with it. And there’s nothing any of us can do except suffer with you. Many hugs

  6. Jean Price at 12:30 am

    Most people have a really hard time supporting those who are physically hurting and grieving! Unless they have learned some of the skills needed or gone though a big loss themselves and have learned what’s NOT helpful, they are apt to do the same things your friends did! It’s uncomfortable to not be able to help someone you like, and to see them hurting! It makes you feel bad, too…so you want them to feel better NOW so YOU can feel better too!!! The not-so-compassionate part of our humanness, I think!!!

    Yet, I believe we owe it to them and TO OURSELVES to tell them…and teach them! To just gently hold up that this doesn’t help!! Especially if we want to stay in relationship with them! We can say something like…
    “You know, that’s really hard for me to hear right now…when I am feeling so bad! I know you mean well, and I think it must be hard for you too! When you see me hurting and discouraged…and you can’t fix this for me! Just know I don’t expect you too! It would help, though…if you just could just say something affirming…like this is really the pits, and you know I am doing as could a job as possible coping with it! Because then…I WILL feel supported, and I will MOVE FORWARD to find my own hope, my own ways of coping better. Even just saying you don’t know what to say helps!!”

    The ones that matter might just take this to heart, and realize how to be better friends! And the ones who don’t will at least have the idea planted that their kind of support is a little lame! I think this is really just another part of advocating for ourselves! And although it would be nice NOT to have to do this, too… especially while we are stressed and trying our best to find new ways to cope during an exacerbation, this IS more the norm than the exception! People just don’t really know how to support others!! And they don’t like feeling bad and out of control because someone else hurts!

    When you think about it, I’m guessing most of us didn’t know how to be as supportive either…before we experienced pain and losses and the need for support from others!! So unless we teach them a little…and they care enough to think about what they are doing…we have to boundary….to pick and chose our BEST supporters! Some are even found here, and other places where those with pain can empathize!! And we CAN find a few, out in the world…maybe like at church and other places where we may meet those who have likely gone through their own trials and know life can hurt, and there are no easy answers, and no one makes it through this alone!!

  7. Carol at 8:01 pm

    I know first hand how ‘friends’ cannot handle the tough times one goes through. I am in awe of what you and John have done with ‘For Grace’, this has helped so many people, more than you probably know. I hope the pain level really recedes quickly.

  8. Tim Mason at 6:17 am

    Anne. I like the way you signed your comment: Name-Age-affiliations-duration.
    I would like to see all of us do this on a regular basis.
    Cynthia, I understand and have empathy for you and everyone else on this blog.
    2nd Corinthians 1: 3-5
    We were all born thru pain: the birth process. and mankind working by the sweat of his brow.
    I watch both my parents and my grandmother die from illnesses. Their lives were painful and they were fatigued.
    By design, we all arrive at this point. Some sooner but most later. Pain does strengthen one’s faith.
    We don’t find empathy from those that have no experience with our illness whether it be friend, doctor or church member.
    The poppy plant is on this earth for a reason.
    Smile at those who lack empathy due to ignorance or jealousy for one day they will remember that smile from Cynthia and all the things she said.
    We live in a time of extreme phobias. Phobias generated out of lies and ignorance and much of it for the sake of the mighty dollar.
    I try and keep a positive mental attitude.(it takes me an hour or two every morning to get that underway).
    Be well
    Tim Mason
    59
    DDD, OA, Spinal Stenosis

  9. Terri Lewis at 1:42 am

    Cynthia,
    We have not met personally and I don’t presume to extend my condolences with platitudes. You know your body and you must be so disappointed by this setback. I’m so sorry. We know so little about this disease and it sucks. I acknowledge your experience and comprehend the unwelcomeness attached to it. I’m sending you all the encouragement I can muster.

    I do have feedback is to the ‘friends’ and the public who do not understand the reality of invisible disability.

    Invisible disability sneaks up on little cat feet and sinks its claws in when one least expects it. Sometimes it rolls in like a freight truck. In either case, it creates a conflict between expectations – the expectations of the individual who is affected and the expectations of those those have been taught that illness is a matter of ‘will’ and who lack the imagination to comprehend your current or lifelong experience.

    We who are the walking well extend our support framed in positive self help talk because that is what we have learned to do. Our whole system is primed with positive messaging that says one just needs to try harder, eat and sleep better, move more, take care of yourself – the solution is yours if you want it enough. If that were true, we’d have far fewer of our loved ones and friends dealing with unexpected and barely manageable disruptions attached to chronic illnesses.

    Our thinking is foreclosed by poor understanding of the challenges and origin of the health condition and we are confused by having seen you operating in a better state – which indicates progression toward a cure doesn’t it? If our friends look to be intact, haven’t lost limbs, or a little makeup or a haircut still supports the illusion that they are okay then we can hold our personal expectations for your illness to a higher standard – which has nothing to do with you and everything to do with us.

    We who are the walking well need to take a mindful moment to learn and listen and take our direction from our compromised loved ones. We need to be willing to learn and above all things, support, listen, and advocate our loved ones as they navigate this unwelcome change of status.

    Hopefully this setback is temporary, but it might not be. Just like real life, there are ups and downs to be navigated that require us to manage our expectations and options as our body restricts our choices.

    Cynthia, I am crossing my fingers for better days. Surround yourself with those who support you and don’t worry about the rest – it’s not your job to make them feel better about your current status. You know that. You have an army of strangers who know what you are dealing with. Borrow our energy – everyone has a little bit to share. One minute, hour, day at a time.

    Peace and hopefully, moments of respite.

  10. Bev Murphy at 9:21 pm

    Although I don’t know you well at all, I do appreciate all the work you do on our part to stand up for us. Right now, I think you need to lie down or whatever works for you best, and just give yourself some time to recuperate as best you can. You, more than anyone, knows to listen to what your body tells yous. Gentle hugs and good wishes for you fellow warrior.

  11. Sheryl M Donnell at 7:13 pm

    As a fellow CRPS warrior who is facing a similar situation due to breaking my CRPS foot and getting abysmal care, I appreciated your speaking our joint truth and how it is so common for us to be expected to make others more comfortable than to allow ourselves to grieve our changes. You are in my prayers.

  12. Cynthia o. at 5:31 pm

    I am so sorry to hear this….been following your story for a long time…God, please bless you….I don’t know if this is the appropriate place to ask this question, but I’m wondering if anyone on this forum has had experience with Statin drugs? I’ve been taking one for 15 years, and have recently stopped after hearing my doctor tell me his personal story last week….He took some time off about a year ago and I didn’t know why until he explained it. He said he thought he was dying about a year ago, I couldn’t get out of bed. He stopped taking the Statin that he’d been taking for a long time. He started doing the vitamin C protocol with proline and lysine. And he said it took him six months to start feeling better but that he’s a lot better now. So I’m really questioning whether or not my neuropathy, which they tell me is non-diabetic, and also my muscle weakness and deterioration , and bodywide pain, could be from the drug I took for 15 years. Anyway just wondering what other experiences might be out there in this community?

  13. Tara White at 4:10 pm

    My thoughts and prayers are with you, Cynthia🌼

  14. John Schofield at 3:58 pm

    Your article immediately struck a note with me. I live in the U.K., and I write almost exclusively in Spanish to people who suffer from ‘invisible’ chronic autoimmune diseases such as lupus. They, too, have to deal with essentially the same well-intentioned commend !

  15. Deanne E. Daniell at 3:16 pm

    {{{HUGS}}}. Nobody has the right to downplay YOUR pain to make themselves feel better! Love!

  16. Sheri Kay at 2:07 pm

    Cynthia, I’m so very sorry to hear about your remission taking a drastic dive and how things have been going since the end of last year! It’s so hard to deal with grieving all the losses this brings to one’s life. Traveling the stages of grief of having one one’s life shredded to pieces because of the pain and the roller coaster of emotions never knowing quite what’s going to happen and taking forever to process is just hard! May you hold tight to the purpose of what you have been teaching for years! Keep yourself a priority right now and never lose hope things will calm down! May God bless you on this journey!

  17. cindy deim at 1:52 pm

    I’m so sorry to hear this. I’ve read some of your articles and it must be very hard to go through this after having time off from a great deal of pain. I hope that you feel some relief soon. It difficult when people can’t truly understand what it’s like to be in constant pain. It’s very hard to understand something you have not experienced. I wish you well.

  18. Roslyn at 1:50 pm

    Cynthia. I hear you. After a while even your best friends and sometimes some members of your family don’t nderstand nor
    do they want to
    hear anymore
    You’ve had to refuse
    multiple social invitations. They just
    quit ask asking…. its
    same old song. Their lives move on
    It hurts to acknowledge what’s happening. As well as hurt from the pain.
    Thank you for sharing.

  19. Kim at 1:46 pm

    Cynthia, thank you for sharing .. and bravely calling this what it is. My RSD started in my right foot and progressed to encompass the right and left feet/legs, and then my right hand/arm. I think you are right .. people do not know what to say, and the platitudes are so hurtful if you take them in. Like many things in life, people can not ‘get it’ until it happens to them… so they try to share what they heard or read .. something, anything to try to help ‘fix’ it. Am sending you hugs of comfort, and prayers for strength and pain relief. Am so very sorry your remission was interrupted.

  20. Mark Ibsen at 1:42 pm

    God bless you.
    Words cannot convey the grief you must have now,
    The frustration
    Etc
    Yada yada
    And
    Blah blah blah.

    So I give up.
    I can only request or invite you on whatever spiritual quest this terror is asking of you.

    Be well
    Pray
    Recite the serenity prayer
    Control what you can( almost nothing)
    Give up
    Surrender to something beyond or greater than.

    I’m praying 🙏🙏🙏🙏🌈🙏🙏🙏🙏

  21. Dianna Byrne at 1:24 pm

    Cynthia,
    I read with dismay your post regarding your current chronic pain frustration and fear. Oh, how many of us have faced this thinking, “I’ve had two good days in a row, maybe things are getting better”. But then on the following day, we are back to the same torture as before our “‘remission”. It must be terrifying being in less pain for so long and then being thrown back into the pit.
    My comment is this, go back in your bible and read the book of Job again. Not to compare yourself with his situation, but to understand that these men who came to him and purported to be “friends” were not that at all; they just found a platform to inform Job of their own beliefs and gabbed on about it for 37 chapters. Humans are this way sometimes. They want others to know what they believe to be true, even though it isn’t. You know from experience what is true, but they don’t and just because they have a platform doesn’t mean they know what they are talking about.
    Friends should be there to listen and try to understand, not state what they “think” they would do in any given situation.
    There are many of us here who do understand and although I have not been in this situation you find yourself in, I do understand the failings of humans even though they think they are doing and saying the right thing!
    Keep fighting the good fight and focusing on others who struggle with pain issues, but don’t waste what energy you have being “politically correct” in your response toward their statements. Sometimes just telling our truth makes us feel so much better!

  22. JoDawn at 11:26 am

    ((((Gentle, gentle hugs!))))

    My sweet friend! Yes, you do TOO good a job of faking it. And you hit the nail on the head about people not knowing what to say.
    I ran into this nearly 30 (gasp!) years ago when Pat and I lost two babies (pregnancies, but still hurts) in a row. We thought our oldest would be our only.
    And the people around me, the ones I needed to cry on their shoulders, either avoided me, wouldn’t bring it up/changed the subject, or the worst, “you can always try again.” Something you’d never say to someone who’d had a 3 year old die. SMH.

    I’ve decided the best thing to do, for someone else in pain, is to listen. And hug! I’m so grateful you found those things…compassion… where it is always supposed to be.
    Love & hugs, always!
    Jo

  23. Laura P Schulman, M.D. at 11:04 am

    Wow, Cynthia, I’m so sorry your remission has gone South. So has mine, and I’m really, really bummed.

    Able bodied people have a really hard time imagining what it’s like to live in pain and disability, for the simple reason that they don’t have that in their library of experiences. They have no reference point.

    I’m so glad your church people are able to open their hearts to you where YOU are. That’s very special. That’s what we need!

    Virtual soul-hugs to you, dear sister. I’m putting in my order that everyone who needs a permanent remission should have one, very soon!

  24. Danny at 10:54 am

    What a powerful, wonderfully-written description of the mental, emotional and physical pain you have been experiencing, Ms. Toussaint, since losing your remission. I am so sorry for what you are enduring.

    I understand the desire we all have to justify the hurtful things that friends and family say, using the phrases in this article, such as “they’re sad for me” and “they want the best for me”, etc… But what we really need is exactly what Ms. Toussaint got from her church family – supportive people who refuse to accept our throwaway comments like “I’ll be okay”. We all need the kind of support that doesn’t allow those comments to go unchallenged. And we need people who are sincere when asking about our condition and validating us with respect for tolerating something that, while they might not fully understand, they know us well enough to acknowledge that since it’s taken away our former lifestyle, it is a very serious and difficult condition.

    You have my prayers, Ms. Toussaint, for less pain, a new remission and for the struggles that you are dealing with.

  25. connie at 10:19 am

    Your pain and frustration belongs,in a way, to all of us in the pain community. As there’s nothing to say or do to make it better for me I will just say that my heart goes out to you. ((( very gentle hugs)))

  26. vicky at 10:15 am

    You’re not alone in this. I spent most of the day yesterday waiting on new scrip for pain meds. Pretty sure I am reacting to new generic percoset from pakistan. Who knows what’s in it. So I sat for 3 hours to get new scrip and then waited another 2 at mom and pop pharmacy to get the old generic I used to be on. The pharmacist got all wigged out about early refill and dea. I told him I had just come from doc where I watched as she first counted, then flushed 110 tabs. I guess there is some new form you have to bring when you do this. He finally got the paperwork he wanted but once again, I am treated like a criminal. I’ve had no early fills or problems until Dec when I was forced to Walgreens as blue cross won’t cover CVS anymore. Right around then my neuropathy returned so bad I have missed weeks of work. I’m doing everything I can to dial down inflammation but the switch is in on mode. Many days I would prefer to be dead than endure pain and lack of understanding from others. I too appear to have relapsed …5 years into this illness with immune dysfunction…massive inflammation….high titers for many viruses…fungus…bacteria…lyme….and on and on. I was a high performing career woman and now I’m a disheveled mess. We have just about lost everything. So yes…I hear you!! I make a rule to avoid er as they have been very abusive. So unless I’m pretty sure I’m having another stroke I won’t go in. Prefer to die at home than be treated like pond scum. If I had proper treatment at onset for lyme instead of being handed steroids and told it was fibro I might not have been this messed up.

    And now the govt who denies this illness even exists is trying to take away pain meds. I think already they are messing with potency.

    Donald Trump wants to go after opiod addicts. The bigger question is what is causing so many pp to seek out pain reflief.

  27. Anne Nickol at 10:13 am

    Gentle (((hug))) Cynthia. You are loved. You are a beautiful woman with a caring, beautiful spirit. Your pain does not define you, but I know it has taken control recently. Do all you can to feel better and please just take each day as it comes. That is all, and enough, for you to deal with. Remember that there are others that do understand and feel your pain. God bless you. ❤

    Anne
    69
    fibromyalgia for 19 years

  28. Terry at 9:58 am

    I’m so sorry your friends are saying these things to you when you and I both know the pain is almost unbearable. Please be careful of steroid injections or pills as when I was first diagnosed my Dr’s., put me on heavy doses of steroids. Come to find out now I have Avascular Necrosis…. that means that the bone around my hip joints are disintegrating a bit every day and the new Dr.,said I got this from too many steroids!
    It irritates me to no end when people say things like ” You just dwell on your pain too much or you look good. I’ve had to not be friends with some people because they couldn’t comprehend that I was in severe pain all the time!
    Best wishes to you and all whom suffer with this terrible disease!