The Comfort That Doesn’t

The Comfort That Doesn’t

By Cynthia Toussaint

Cynthia Toussaint

Cynthia Toussaint

If you’re like me, you’re tired of hearing that “everything happens for a reason.” People have been sharing empty clichés like this throughout my 35 years of high-impact pain and fatigue – and I can honestly say they’ve never helped.

Others on my “Do not appreciate” list are – “God works in mysterious ways”,  “You’re the chosen one”, “What doesn’t kill you makes you stronger.” My least favorite, and most often heard, is the classic, “It could be worse.”

I’m more irritated than usual by these platitudes because my life has been such a challenge of late. Before Christmas, I got walking pneumonia which knocked me on my heels for two weeks. I felt lucky to get well just in time for my partner John and me to go on our long-planned, eight-night holiday cruise.

Then a rare Los Angeles rainstorm left our condo with significant water damage. Packed and ready to sail, our restoration contractor advised that he and his crew had to immediately demo our master bedroom and bath, then dry the condo with big fans for days to avoid mold.

With sunken hearts, we cancelled our dream voyage. Then I got super sick again. This time with an upper respiratory infection and breathing difficulty. Two doctors confirmed that the work in our condo caused my illness – and John and I are currently living and working from a Burbank hotel. Adding madness to the misery, the contractors don’t think they’ve mitigated the mold.

This cascade of misfortune has opened the barn door for every cliché mentioned above. Just like when people respond to my physical pain, these folk may indeed mean well. But I think there’s something else going on here. More than comforting me, I suspect these niceties comfort the comforterer while offering them a convenient escape hatch.

These snappy exclamation points end difficult conversations about pain and suffering. The deliverers project their beliefs and are rescued from going to a place of empathy. As a woman in pain, I need to be surrounded by strong, caring people. People who can go to real places including those dark and unsettling.

This is a very scary time in my life. I’ve lost much of my strength, I’m sick and displaced, my immune system is compromised even more than usual, my body trembles from post-fever, I can’t exercise, my pain has spiked – and I have work trips coming up next week that I need to be 100% for.

I need deep, loving support. Not empty words, not a wink and a pat on the back. I need people with a softness and warmth in their voice. People who dare to enter the kingdom of the sick.

As for the faux-happy sayings, let’s please put a cork in them. How ‘bout we try “Bad things happen to good people”and go from there…

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.

https://www.nimh.nih.gov/health/statistics/prevalence/major-depression-among-adults.shtml

 

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There are 25 comments for this article
  1. Cindy Mears at 11:20 pm

    Cynthia,

    From a Cindy in NC. I am very sorry these cascade of bad events have happened to you.
    Very sorry.

  2. Jean Price at 11:24 am

    Leah…I understand about life getting worse. A lot of us here do. It still amazes me after all these years how I’ll think next year will be better….only to have the next year show me how good I had it BEFORE because now I am in fact worse!! I can’t imagine how hard your life is, even though I live with pain, too. And I’m so sorry you can’t get the care you need. There’s no excuse for this…or for you and all of us to live with more pain than we should have because of denied medications and treatment!

    I’m also sorry you have had your own beliefs overlooked at times. Each of us have the right to our own personal views, and the right to not be bludgeoned with those we don’t hold ourselves. There is a saying which paraphrased says….faith without action is not really faith…and I agree wholeheartedly that often those who propose to spread comfort and hope with WORDS could do much more to help in other ways that would make a real difference in our lives! Unfortunately the most devout people are still only human…and as flawed as the next person about sharing what they could with others in need. In a perfect world, there would be no unmet needs….yet its hard to deny that our world is littered with unfairness and injustice throughout. We all just try to do the best we can, given our own circumstances….and live to see the day when the craziness about pain care stops and we are treated with compassion and good medical practices instead of what’s happening now. By telling our stories, we hold up the abuse for others to see and maybe IN TIME, enough will join us to help change it.

  3. connie at 10:57 am

    I guess I am not a good English liar cuz years ago when I had to cold turkey off of fentanyl, lyrica, and several other addictive drugs that I was forced to take I I wanted fentanyl I tried going to a meth clinic and was told I didn’t qualify because I was a pain patient not an addict! I sure wish they would get the story straight! I thought and finding some heroin to shoot up then show them the track but I hate needless so much that I chose to suffer instead!

  4. Ripley at 5:11 am

    Constance,

    You can always go in and tell them you’re getting off narcotics and need some methadone. It’s unconscionable to think that a doctor would take you off major pain medications without weaning you off first. But I have been there done that too. After surgeries for oral squamous cell carcinoma x4 I had to get off painkillers many times. I would save enough so I could wean myself off of it. I never trust doctors. The last one cut more tissue then she should have and never told me about it. She cut down my narcotics too. Never saw me before or after surgery and then had the nerve to call me a drug addict after I had to deal not only with the unnecessary surgery, but the surgery behind my molar which did have a precancerous lesion. The pain was excruciating. Back in 2005 there was no problem with getting enough medication for my pain. She took out 1 cm of tissue, left side buccal tissue in my mouth in 2012. Vertical cut. Wide area excision. It hurt like the devil. It was infected and I had a fever. I went in and her nurse told me I should go to drug rehab. Unbelievable! Anyway that was not the surgery I was supposed to have and they found no evidence of a precancerous condition they thought they saw on the pathology report during surgery. After two weeks my doctor would not see me and I was to see her colleague, a plastic surgeon. Instead I saw her nurse. When I complained to patient advocacy they denied it. Dr. lied. Never go to Emory because some of the doctors there just use you as lab rats. I went to see another specialist and he told me he knew of this doctor and he was getting all of her patients because of her bedside manner.

    Anyway, my point is always prepare for the doctors. I did this before the CDC came out with their golden rules. I am not an addict and I did not want to take drugs because the narcotics more than likely have Tylenol in them and it’s Tylenol that kills your liver.

    Anyway, I still have pay for my bicycle accident on top of all else. My doctor will prescribe nothing. I have taken things into my own hands. Do what you need to do.

  5. Leah Salby at 4:45 am

    I agree 100% with this article. I’m sick of hearing “things will get better”. No they don’t. After being hit by a policeman while bicycling I was hit by another car while I was driving. Things don’t get better they get worse sometimes. And please don’t do your Bible thumping on me. How dare anyone assume I am a Christian? I’m an atheist. I have a Jewish heritage. So please leave your Bible thumping at home. Ugh! You don’t feel the pain I’m in and God’s got nothing to do with it because there is no God. He’s an opiate for the masses. I surely could use a lot of opiates. Can’t get any for my pain. How about all you Bible thumpers take it off my back? Give me a massage. Give me the money it takes to fix my separated shoulder that I can’t afford. Put your money where your mouth is. Honestly, some of these people make me want to vomit.

  6. Jean Price at 7:03 pm

    Robert…please don’t apologize for your faith in God helping you live a more comforted and hopeful life with pain! I think there are may of us who also feel the the same, and know the grace of God sustains us! The use of scripture passages or overused supposed “uplifting” clichés that we’re talking about here are not used to be truly supportive or even spiritual…but rather as a big stop sign held up to stop the conversation so THEY don’t have to feel BADLY! And it’s more about them NOT BEING ABLE TO TRULY HELP! Or they may JUST feel frustrated that we are hurting and they just don’t get it…there must be a problem with us if this is even true! Perhaps these people also don’t want to face the fact that our situation could also be theirs one day!! Whatever their goal…it isn’t helpful to try to “fix” us, or to offer empty statements…that they may not even believe in either. Especially without affirming the awfulness of daily pain first…even just saying they “can’t imagine this” is better than the other choices. I’m pretty certain I wouldn’t have made it this far without God! And I am positive I wouldn’t have made it through as whole and happy of a person in general as I am! Yet if someone tells me God won’t give me more than I can handle…I tell them they are wrong! God didn’t give me pain…but they are right about one thing…I can get through anything as long as I’m holding His hand! And I DO, every day, all day!

  7. connie at 2:42 am

    Being a woman I don’t hear be a man but I sure hear the suck it up part!y mother had two major back surgeries with NO pain meds because she doesn’t like how it makes her feel and she loves playing the martyr so of course no one should ever take pain meds! I

  8. Layla Rose at 4:50 pm

    Oh and I just had to add… that God never putting more on you than you can take is such cr*p. Have they never heard of nervous breakdowns or suicide?

  9. Layla Rose at 4:47 pm

    Yes, those things are so dismissive & invalidating. They make me want to scream. One of the (many) reasons, I rarely tell anyone about my problems or discuss with anyone except those with whom I know are going to actually be supportive. I’m sorry you’ve been through so much, truly, and I hope that you’re able to avoid home disasters and serious infections in the future.

  10. Jean Price at 4:30 pm

    Oh Cynthia…you have crystallized the issue of inappropriate support! And I’m so sorry you’ve experienced first hand just how inappropriate it is…by living with pain and illness and seeing all that falls short of being helpful and comforting, and lots that is just plain abusive! So I give YOU what I ask my friend for…a poor, poor baby! (Here’s how it goes…I call her and just say I need a “poor baby”… and without explanations or needing to justify myself, she starts in….)

    “Oh, you poor, poor baby! You so don’t deserve this! This is awful and I can’t imagine someone as sweet and wonderful as you having to live with this terrible pain! It really sucks! And I’m so very sorry, Cynthia! Poor dear!! Plus being sick on top of it, well…it’s all just not fair! Not at all! Plus all the house stuff…that must be an added nightmare!! I don’t even know what to say…or how to help you!! But I would take some of this if I could…this is way too much for even a strong, brave person like you to handle….dang, this is so wrong! Poor baby! I hurt along with you…and just knowing even a part of what’s happening to you makes me want to reach out and hold you and tell you it will all be okay…but how can it be when you hurt like this all the time? I’m so sorry. I’m praying for you, and I love you!”

    Hope this was better than what you’ve been getting! (And although I’m using your plight from the article as an example…I truly DO mean all of this for you!!)

    With my friend, I usually say something to let her know when she has given me enough…and I’m feeling comforted! You can probably figure this makes me really feel better! And then…I can then find my own hope! I might even respond…”Thanks, maybe tomorrow will be better!” Or “It really is the pits, yet I’m so blessed in so many ways, and that helps pull me through.” And I can then end with a heartfelt “Thanks, my friend! You do help me just by listening and not abandoning me!”

    Real support has to start with affirmations of the truth…without us having to justify ourselves or explain all that we’ve tried and all that has failed or been denied us!! Yet, so few people know how to give good support…there is an invisible sentence after most of their cliches that says “I want you to be better so I CAN FEEL BETTER!” It’s like the person giving support is not okay with where we are because it bothers THEM! So they need to say something to get us on the right track so we won’t be a worry or concern for them! So they try to manipulate this by giving us a big dose of what they consider hope…look at all your blessings; or they compare us to show us we’re not really so bad off…it could be worse; they even can give us the logical reasons we are hurting….it’s God way of making you stronger; and of course they seem to know exactly what will help…if you just go do something to get your mind off things and get out of this house, that will work wonders…you feel lots better, trust me! (Actually, I think “trust me”, and “I know just how you feel!” are the two most abusive phrases in the English language!!)

    WOW, so why didn’t we think of all this first?! Right?! No! Wrong! When we need support, it’s not to “fix” us, because we’re not broken…it’s to help us with our feelings, and feelings don’t have to be logical! So any attempt of others to explain or philosophize or try to pull us out of NOT needing their support is FOR THEM, for their comfort…not ours! Until more people learn this, either through education or having their own experiences with inappropriate support, we’re not likely to stop hearing all the platitudes and cliches there are. We can sometimes end run this by saying we just need to talk, not be fixed…and we don’t expect them to “do” anything. Or we can hold up that the things they say aren’t helpful, and we know they may not know how to support us, or what to say…but it’s okay to just say that! That helps more than anything sometimes.

    Sadly, inappropriate support seems to be the norm….and it doesn’t just happen to those of us in pain! (Even our fellow pain people don’t always give good support to others in pain!). Cliches and “empty support” are often what is given to anyone who has a loss or is going through a difficult time or a change in life. It happens even among kids! My daughter lost her bid for student council one year, and heard no end of statements like…well, there’s always next year, or….I’ll bet you’ll be glad you didn’t get it because then you will have more free time, even one friend told her she didn’t really want the position anyway!! Because my daughters had both been to a grief class with me…she saw all of this for what it was…inappropriate support and unhelpful!! And she was even more upset then and also angry about all this!!

    So when I had said….I’m sorry! How disappointing! I know you really wanted this!….she just looked at me, sighed, and said, “Thanks, mom. Yes, I did want this and I’m really bummed! Yet, I CAN run next year and maybe get it then!” She found her own hope with the the right support…starting with the affirmation of her disappointment. And we can too, when we find someone who knows how to give it!! Plus we can teach our families and friends how to be those people…how to say what helps. It’s worth it!

  11. JoDawn at 4:19 pm

    (((((((Gentle hugs)))))))
    I’m so sorry you are having to go through this.
    Thank you for using such a painful time to help others. You have such a giving heart!

  12. Robert Dean Rose Jr. at 2:43 pm

    Cynthia and others, I apologize but I really survive day to day with the knowledge God will never give me more than I can handle and If God brings me to it, He will, with His amzing grace and mercy, bring me through it. In fact, it is my belief that in October 2016 He became tired of my whining and complaining, as well as asking on really bad days for Him to just bring me Home to stop it all, that He kicked me in the ass and gave me new meaning to live for. I now understand I am not in this alone. There are individuals out there, veterans and civilians suffering more than myself and they need a voice. Although I am now pain med free, in my good moments, I am dedicated to helping ALL Americans with the asinie guidelines, policies and proganda which is causing all the attacks on true heros like you who continue to work and motivate people by raising awareness about CPP… For now, I will continue ask God to intevene on our behalf. Please join us at Vets Fight Back #vetsfightback . Thank you, take care and may God bless. “Teufelshunde.”

  13. Constance at the end of my rope at 2:10 pm

    AND: :When a door closes, a window opens”
    OR, when I said to a close friend that “I’m at the end of my rope!” Her reply: “Get a longer rope”.
    Also, I was told: “Maybe it’s your mission to lead the cause against the current law for those who suffers from chronic pain.” REALLY?!!! Do these people not understand that chronic pain makes it impossible to function, let alone “lead the cause”!
    I’m exhausted and have given up. I saw my neurologist on Thursday and he took me off 3 medications and put me on Lyrica for the tingling sensations from MS. The next day I saw my pcp and he didn’t give me anything for pain…I CAN’T DO THIS MUCH LONGER. I AM at the end of my rope and it has a noose at the end.
    Honestly, I have been fighting for relief since last March, when the doctors received the “Guidelines for Prescribing Opioids for Chronic Pain Patients”…my pain meds were cut and I was forced to go cold turkey- that was pure HELL!
    Tell me what’s better; offing myself or going out and find street drugs for pain relief? Heroin addicts receive treatment (methadone).
    WHICH IS BETTER???
    I have a feeling that I will be calling the crisis line-don’t think they can help me this time. I’m not looking for attention. I am truly suffering with no place to go.
    God bless you all.
    I’m hoping I can make it through the weekend.

  14. Kail at 1:25 pm

    And then some of those same people wonder why we “isolate” ourselves, and disparage us for doing so. The only thing worse than isolating, for me, would be having people around all the time to REALLY see me when I haven’t the strength or will to pretend I’m even remotely ok. My love and prayers to you, Cynthia.

  15. I.C. Hardtimes at 10:51 am

    Words just don’t seem to be of much comfort to me.Folks feel obligated to acknowledge your problem, but they really don’t understand or maybe even care what you are enduring, as long as it is not their problem. Sounds kinda cold, I know but, if they were enduring the constant effort to fight pain and fatigue, their response would more genuine. Even with sufficient pain relief medication, it is still an uphill battle. Constantly. Hate to sound like the well worn violin but, sufficient medication is under fire from the CDC.. I have been a chronic pain patient for 20 years. I can’t “wish” the pain away. I can’t “talk” the pain away. A doctor even once told me that I could control the pain……..with my mind! Imagine your pain as a intense fire, he said. Then imagine that you are using a fire hose or a fire extinguisher and you are suppressing the fire, your pain, to the point that it is minimal. Are you kidding me? True story. I have been on an opioid medication of one kind or another for 18 years.I was placed on methadone by a pain specialist. I thought methadone was used to treat say heroin addicts get themselves “clean. No, the specialist stated, it will help you with your chronic pain. After being on medication such as oxycontin and other expensive opioid meds, I could never reach a point that the pain was sufficiently suppressed without having to increase the dosage so often that I would reach the point the dosage affected other body functions negatively or the dosage was becoming unsafe. So, I would be switched to another medication or a different opioid was added to the medication I had “maxed out”. Low pain tolerance? No, I still work…..as of right now anyway. I have been a construction worker since I was 18 years old. There is no such thing as “easy” construction work.. I still enjoy working. Moreover, I have to support myself and my wife! As a matter of fact, it helps with my chronic pain to keep moving. When my services have not been needed for as little as 3 or 4 days, I begin to feel pain much more profoundly. I actually feel better when I keep moving. Without opioid medication, I admit I would not be able to hardly bathe myself and certainly not be able to support myself. Back to medication. When I was prescribed methadone as a pain reliever, I didn’t like the idea of being prescribed the same thing that addicts were given to “clean up”. It was bad enough having to go to my pharmacy and get a prescription filled monthly for the chronic pain, but methadone? Personally, best medication for chronic pain I have ever been prescribed! I realize that different medications work for some of us better or less sufficiently than others. 6 years ago I was being prescribed 160 milligrams of methadone per day. Yes, that seems like a good deal of opioid medication. However I am down to 100 milligrams per day, for now. I have not increased my dosage in 3 years. I am not pain free but, I can cope with the pain fairly well. I know that pain is NEVER the same. Some days are relatively less painful and some days if the medication was doubled, I would still be in agony. We learn to take pain a day at a time. Well, it seems those of us treated with methadone are in for a change.The CDC has a “conversion chart” for opioid medication prescriptions with their new publshed “guideline”. Even though I have managed to reduce my medication by 60 milligrams per day, it is still too much methadone for my chronic pain. The conversion chart is so that all chronic pain patients will be dosed the same amount of opioids REGARDLESS of any factor. Our metabolism, type of injury or disease. Our weight or any other factor that needs be considered on an individual basis. According to my pain specialist, I am to be reduced to a total of 20 milligrams per day. It does not matter if I get any relief or not. The physician is being told to reduce his methadone patients or he WILL have his license suspended or revoked. In fact, it is NOT a guideline, it is mandantory. Bearing this in mind for you methadone pain patients, you can always go to a methadone clinic if you can locate one. You will be started on 50 or 60 milligrams per day, pay your cash, and see you tomorrow! Your level will be raised until your pain is sufficiently eased even if it takes upwards of 200 milligrams……per day! You may not be able to work if you need to OR have to, but your chronic pain will be eased. Apply for a job and get drug tested or let your employer find out you attend a methadone clinic and see how long you stay employed. Yet I can NOT be prescribed more than 20 milligrams per day after 14 years of being prescribed methadone as a pain reliever. Not enough of a money maker for the right people? Methadone is not expensive to use for pain medication. It works. I am urine tested at the specialist office, then my specimen is sent to an independent labratory for a second test. I am “pill” counted every 2 month visit. I am examined and evaluated from head to toe every 2 months but, I will not be prescribed a medication that works in a sufficient dosage. A medication that I have even managed to reduce in dosage by 60 milligrams, myself! So, we have three choices to reduce constant, disabling pain. Switch to a more expensive medication, go to a methadone clinic, or use your mind to ease the pain. I love rationality.

  16. Wendy Paley at 10:38 am

    I pray the new year will be a much better one for you in all ways! You sure do deserve a break! Why bad things happen to good people is one of the biggest mysteries of the universe. Hopefully you are due for a good new year with better health, prosperity and much happiness.

  17. Jillian Drexler at 10:24 am

    I’m sorry for all you’ve been through lately. Omg, and I thought I was the only one annoyed by these cliché. I have a “friend” who has several of them for pretty much every negative occasion that can happen in life. I plan on emailing this to a few people. Thanks for writing this!

  18. Lori at 10:17 am

    I only have my husband and 3 close friends who truly understand. Everyone else, even family don’t really understand. When they ask how I’m doing I just give the old standard, “Doing all right.” Most people have enough on their plates that they don’t want to hear about my deep suffering.

  19. Glenn Galitz at 10:07 am

    At least you don’t have to hear “suck it up ” & “be a man”.

  20. Sick dood at 8:22 am

    My favorite, “God only gives us what we can endure” is especially irritating. Bleh!

  21. Sheri Kay at 7:16 am

    Ugh! Just reading this reminds me of our flood a few years ago and the sound of the roaring fans that went on for weeks, leaving me feeling as if I was living in an airport with the sound of airplane engines running constantly! We came home after an extended weekend and as we were pulling in the garage my husband said. “why is there water flowing out from under the door and down the steps.” This was after year of surviving my mom, who lived with, us being on hospice and dying during the same time having two kids get married in May and another in August. As well as my son being shipped off to Iraq a few months later. Oh, I forgot we had a fire at our Cottage. And…and… Yeah, there weren’t a whole lot of “experienced encouragers” around. As I decided to let go of the proverbial “knot at the end of my rope”, I no longer had the strength to even hold on! I just threw myself safely into the arms of Jesus and just focused on breathing one breath at a time, trying to feel comfort and peace with where I was at!

    Cynthia I’m very sorry for all you are going through! I can honestly say I understand every word you said! You are so right, people just don’t get it… However, many will eventually… Hang in there as best you can and have hope that it will all pass. Not as soon as we want, but soon!

  22. Anne Nickol at 6:56 am

    Gentle arms around you, Cynthia, for a warm (((hug))). You have been through so much of late. I can’t imagine your pain, both physically and emotionally. Dealing and suffering from what you normally have is hard enough. With everything else that you have been through, it must be so very hard. Know that you have my love and caring to support you. Wish I could do more.

    I also had a serious upper respiratory infection, in November, and it almost landed me in the hospital. I was scheduled to fly to my daughter’s house for an early Christmas. I went, but should not have. I had never been that sick before. And, like you, we have also had house problems. Since last March, we were dealing with water damage in our home caused by poor construction of our roof. It was not until September that we had the dry wall and our roof finally repaired. Then this week, we had a big snow storm and ended up with water dripping down our stair well. I almost lost it. I also currently have a stomach virus that I have been dealing with for almost three weeks. Our weak immune systems don’t fight back when we get sick or keep us from getting sick. I have 3 grandchildren, ages 2-5, and I am sick for two weeks every month after I visit them. I have no resistance to their kid germs. So I am sick, just get better, than sick again after a visit. But I must see them. They are my joy and what keeps me going while living with fibromyalgia. I am 69 and have had fms for 19 years.

    So, I just wanted you to know I donunderstand and feel your pain. You have been through so much recently. I know it is so hard to keep going with the pain, illness, disappointment, and house stress you have been experiencing. All the above makes your fms worse. I want you to remember that you will get through this. And you have my love and understanding as you do. Life is such a struggle in normal circumstances, but you have been through the winger recently. Try to rest as much as possible and think of happy, peaceful things to help both your body and mind recover. It is the best medicine for what you are dealing with. I love you and am praying you are better very soon. I feel your pain and want you to know I care so much. God bless you.
    Anne

  23. Judy at 6:35 am

    OMG, I totally agree…all those empty cliche’s drive me nuts!!! I’ve been living with chronic pain for 25 years, and when someone (someone who’s suppose to KNOW & LOVE me) asks, “what’s wrong?”……I just wanna scream at them, what the hell do they think is wrong??? I’m having a worse than normal pain day!!!!!! I no longer bother to try to explain what it’s like for me to live with chronic pain. They just don’t “get it”….and they never will. I too would LOVE to have deep, loving support, but that’s not gonna happen. So I’m in this battle by myself….and it sucks.

  24. connie at 4:47 am

    I so agree with these sentiments! I am so sick of the platitudes, I would rather have nothing than cr*p. I have never understood why people are so afraid of the reality of the life I have. In my case it’s not contagious! It’s ironic that when my son died people used the same words with the same lack of real feeling and keeping themselves at the same distance from me! I often don’t have the words to make someone’s tragedy in life better but I’ll be dammed if I am going to say those stupid things!

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