My Story: What You See Is Not What You Get!

My Story: What You See Is Not What You Get!

By Suzanne Stewart

Having Chronic Pain is unlike the pain following a surgery or even the pain after an injury. Many things about Chronic pain are not seen with our eyes.  There are so many “invisible diseases” that involve living with exhaustion, illness and pain.  Many people think they know about these issues.  If they’ve not witnessed life with a chronic pain patient, then they truly cannot understand or know what we live with on a daily basis.  People are misinformed and sometimes quick to judge persons living with pain day after day.  Some think we are lazy, anti-social or just rude.  We cancel appointments, shopping trips and dinner dates with our friends and family.  But we are not any of the above.  We are people who have hopes, dreams and inspirations; just as anyone else.  The issue is that our futures don’t include many of those same things after we become chronic pain patients.  We must grieve our losses and find new hopes and dreams.  This is the price that we pay for living with chronic pain 24/7/365.

Suzanne Stewart

I am still “me” underneath the chronic fatigue and pain.  I still want to talk with you and hear about your day, family and dreams.  In between the days of staying in my PJ’s and lying in my bed or on the sofa, I try hard to be a part of your “normal” world.  Some days I may even look “normal” to you.  In fact, most of the time, I probably appear to be “just like everybody else.  I try to wear nice pants, cute dresses and sometimes I put on make up, just like you do!  If you visit my Social Media photo feeds, you’ll see someone who “looks normal”, holding onto her grandchildren’s hands, smiling and actually joyful underneath the pain somewhere.  Sometimes even sitting on the floor with them.  You may read about me “babysitting” for our grandchildren; or going out to dinner with our friends.  You may even want to “judge” me by saying to yourself “How can she be that sick or in that much pain, if she’s doing all of these things?”  If you think like that, I can’t blame you because I once thought those same misinformed thoughts.  What you don’t see, is how I get to the floor or how long I am actually down there.  You don’t see my husband helping me (and doing most of the work) to get me up and off of the floor.  You don’t actually know how long I am down there or how many pillows may be behind my back. You also don’t know that I most likely stayed home in my pajama’s all day until 4:00 pm when we had dinner plans at 5:15 pm.  You also aren’t privy to the information of how long I might’ve stayed at dinner and “if” I was able to even eat anything that night.  Not only do I have several chronic pain illnesses, but many of them are invisible to you. They are very much visible to me. I can “see” them with each new line on my face and each new grey hair that gets covered up each month. I can’t only “see” the pain, but I feel it with every part of my being. It doesn’t go away, not ever.  Though some days are better or worse than others; the chronic pain of “Invisible Disabilities” and “Invisible Illness” is apparent to me every minute of every day.  Often I fight with myself about going to sleep at night.  Do I try to go to bed at a more normal time and maybe get 4-5 hours rest? Or do I stay up until I drop; then fall asleep quickly and wake up in just 2 or 3 hours?  If I sleep more than 2 or 3 hours, I will awaken and cry.  Whether it be inner tears or outward ones, I will cry from feeling as though someone set my body on fire due to the CRPS. I will have tears from feeling like my neck and back are broken from the Degenerative Disc disease, Spondylosis, Scoliosis and/or multiple herniated/bulging discs in both my cervical and lumbar spine; not to mention the Chiari malformation I in my neck. Yes, if I move or get up before I’m ready, I definitely will cry.  It’ a routine that we have, you know?  My husband gets up at 6:00 am every day to give me my medicine; just so that I will be able to get up with him a couple of hours after that. He is my hero.

You cannot feel Gastroparesis, but if I eat one wrong food at dinner time; I will be up all night and very sick. My husband, who is also my soul-mate and my caregiver; knows all too well about these long nights.  I have worries, though he continues to tell me that they are unfounded; that he will get tired of all of this one day. It’s not much fun to be with someone who is constantly complaining about pain, so I try to keep it to a minimum.  But even to him, my pain is not invisible.  He knows the grimace of CRPS and the fidgeting of the intensifying pain on an outing.  He knows that when I start rocking back and forth, it’s his cue to step in and say “time to go home”.  I know that my own family gets frustrated with me because I’m not able to babysit “alone” or have kids dropped off on the spur of the moment.  I cannot commit to babysitting for the little ones under school age for a week.  I’m not able to help take the load off of my children and their spouses, so that they can go on a trip. There are many things that I cannot do but there’s so much that I still have to give.

Please don’t judge what you do not understand. If you think you know, then go and read some more about chronic illnesses and pain. Spend time with someone like me and see how impaired the activities of daily living have become.  I’m probably not always much fun to hang out with, but I’m still “me” inside.  Digging through the pain and exhaustion, there’s a real person inside, who still has a heart and feelings that can be hurt.  Feelings that are probably more fragile than most because of the judgements, stares and hurtful words that come from some people who are misjudging and misinformed.  I’ve had nasty notes put on my windshield, that would make anyone cry.  One note said this “How dare you take this HC parking space! It must be a “mental thing”! I hope you become handicapped for the rest of your life, so you know how it feels to have someone take your parking spot”! Yes, indeed; that was the note left on my car at a little market right across the street from my house.  I had my cane in the grocery cart and the little blue HC parking permit on my rear view mirror.  But I was still judged and torn to shreds because of the way I look.

Please know the difference between being able to stand for 20 minutes and being able to stand all day.  The difference between having the flu and feeling that same way for many many years! Try and understand that what I might be able to do today, I probably won’t be able to do tomorrow.  Don’t say “Oh you look happy and healthy” or tell me that I’m looking or sounding “better”.  I’m just trying to cope with the life that I have been dealt. Please don’t judge me if I try to do awareness events or fundraisers for the causes of my illnesses and those of my friends.  Though I may “do” these things; I definitely know that I will “pay” for it later.  I will rest for days in between and sometimes weeks.  But I deserve to do things and to try and be happy; even if it is in between the pain at its worst and best.  Please know that getting out and doing things doesn’t make me feel better, it actually makes me feel worse for days at a time.

Chronic pain is hard for you to understand.  It wreaks havoc on the body and the mind.  It is exhausting and exasperating.  I’m doing my best to cope and live my life to the best of my ability.  I ask you to bear with me, and accept me as I am.

Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor.  She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S.Pain Foundation. 

For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth (Suzydukettes.wordpress.com).

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Authored by: Suzanne Stewart

There are 17 comments for this article
  1. Rick at 11:58 am

    Do u know any healthcare advocates for our disease Suzzanne? I just got fired by my php and my pain dr dropped me because of my Govt insurance. I’m here in Casa Grande AZ – one horse town, with no Drs and 5 rxd no meds!!!!! Pls help if u can. I’m scared to death:(
    I have pic proof of losing my 2 major RSD Drs. Will be happy to share my story when hands better. More like a comedy. I’m tired and need some help.

  2. Tim Mason at 6:45 pm

    Great Thread. I enjoyed it. Genesis Chapter 1 tells us about pain and suffering. The Apostle Paul, beaten and imprisoned (Philippians 4:12) “Be content in what every condition you find yourself in”. Pain and suffering is the underlying theme of the Bible. Pain and suffering exist in every race and culture on earth. We cannot escaped it. Things could be a lot worse for all of us.
    As we go thru the spring of our lives, care free we pay little attention to those slow old crippled people. Subjective as pain is we have no concept of Chronic Pain via organic disease. Now in the fall and winter of our lives we experience it. Try to explain it to younger friends, and young doctors and even younger nurse practioners an physicians assistants.
    For the most part, they will remain clueless, naïve and pass off our complaints as just that.
    Life slows us down. I share the analogy of the puppy Dog. Young and spry, jumps into action at the slightest noise. They age much quicker than humans. We see them grow old, slow, gray and arthritic. I have four buried in the back yard with grave stones. I have seven more growing older and weaker like myself. The best we can do is seek a Geriatric doctor that is old themselves.
    I watched my parents die over a decade ago and know that dying is part of living.
    My father taught me to help those in need and that is what I have done. That is my faith. A stroll through the woods or old cemetery with one or two of my hounds on Sunday Morning is a grand experience for me and my dogs seem to like it as well.
    Good Thread Suzy.
    Be Well

  3. Jill at 6:03 pm

    Suzanne, you have a gift for expressing in words what we are all feeling. I read so many stories of those worse off than I, it makes me feel wimpy that I can’t be stronger, do better. For me it’s just plain old osteoarthritis ( so lucky it’s not rheumotoid I’m often told – duly noted) started 30 yrs ago in my spine. Worked in medical, taking care of everyone but me of course. Now it’s severe in every joint, very severe spinal stenosis, spondylosis, ect.ect
    I’m in constant pain, and so, so tired. Family doesnt really get it. It’s been a lot of years with daily pain. When you write I know at least SOMEONE gets it!! God bless all of you pain warriors..!!

  4. Suzanne at 5:52 pm

    Hello everyone I’m so happy to see that I’ve helped someone or helped give a “voice” to our pain! I wanted to say “thank you!” For your kind words as I know I need to keep “thick skin” as a writer, just in case. I need to be OK when people don’t agree with me, and I am now. But it’s such a relief and a good feeling to come and read that I’m not the only one to feel many of the ways I’ve felt and have written about! Dave, I’m so sorry for you and for all of you/us! I have support groups online and I’m training for in person support groups now this summer. Please contact me if you need help as I’m in facebook and I’d love to befriend anyone who feels alone! Also , Leah, I am not a candidate for many things and for many reasons that I won’t belabor here. But just FYI, I’ve read several articles where marijuana helps certain pain, but not so much chronic nerve kinds of pain. Here’s an article about it. Just for everyone’s info: http://www.smithsonianmag.com/science-nature/marijuana-isnt-a-pain-killerits-a-pain-distracter-169786068/
    I’m not for or against it, I support my friends who trust in it for their pain! I just came across several articles recently so I wanted to share! I’ve read that Marijuana/Cannaboids help because they make persons not care as much about the pain and it distracts and makes them tired
    Also I’m a proponent for whatever works for your pain–Do it!! But I did want to share this article. If you Google this subject there are several articles like this one. There are some that say the opposite is true. It just comes back to whatever is best for each of us; is what we need to do.

  5. Jean Price at 12:54 pm

    Maureen…I think your T Shirt will be a great reminder…to anyone who sees you wearing it! Love this! I always say we should embroider our best uplifting messages on our underwear!! Ha ha! This will even be better, and more socially appropriate to show off, too!! Well done, dear!!

    Dave…I’m so sorry you have had SO many TROUBLES to overcome in your life! And yet I’m so very glad you trust God to help you!! I think each of us with pain knows what it’s like to judged unfairly, yet we can find validation through the stories of others and also learn to affirm OUR OWN goodness too..despite our pain and decreased function, AND also despite what others say or how they act toward us! Keep holding on to His hand and know you are a worthy and honored person…who is loved! Thats really what matters most, no matter what we face in life!! Many times the darts and arrows of others say nothing about us…and yet they tell us a lot about those who judge us…and their lack of compassion and understanding! Bless you for sharing your pain and your story, it has the power to help others, also!

  6. David Marineau ( Manchester Connecticut) at 1:28 am

    Suzanne,
    You were talking about me no one in my family understand what I go thru everyday and like you I wear my pejays morning noon and night I dont go nòwhere I get asked everyday I I want to go well not everyday but it seems like I get picked on for having chronic pain diabetes and the list is not short I am an alcoholic and when I run out of my pain medication I want a drink and I know I cant have one because of my pancreas and what I did to it while I was an active drinker. No one until they get hurt understands pain it started in 1999 when I was at work and pulled my back out all of a sudden all of my problems with my health issues started. I have been Iin the hospital in the last two years at least 10 if not more times and all the cat scans that are going to make me glow and get cancer. Some days I say I wish I just didnt want to wake up I am not suicide person because the lord Jesus christ the way people make me feal it really stinks. Thank you for telling your story it hit home and i really neeeded a wake up call and another thing my parents know I am an alcoholic and told me to apply to a package store that was hiring WAKE UP THE CDC DEA ECT PAIN IS REAL….

    Dave

  7. Lou ann at 1:25 pm

    We need to all tell our stories and invite our doctors to log in and read about the patients he.fails to treat because he is scared, confused’ or just not willing to do the extra paperwork that our goverment now requires for pain meds. When are.they going to realize that the chronic pain people are not the problem? We are the victims.

  8. Maureen at 7:36 am

    Suzanne, once again…a very well written story/post!
    It hit me deep in my heart and I choked up while reading it.
    Thank you for putting it all into words….
    Words that I soooo wish I could tell my family and close friends.
    I just know that they will still not get it though.
    I struggle with that issue constantly and try my best to simply keep putting it in God’s hands.
    I recently had a brother and his family visit me for 6 days from out of state.
    I was thrilled to have them come visit me, to put some life into my quiet life!
    To distract me from my pain.
    I’ve never had a whole family come stay with me.
    The work I did in my home to prepare for them, and then the cleaning up afterwards threw me into a FM/chronic fatigue flare for days afterwards.
    They have no idea how much I suffer.
    I could not go out to lunch or to the beach or go visit other siblings here with them. I stayed home in bed on ice packs whenever they left my house for a few hours.
    They would ask upon their return ‘So, what did you do today?’.
    I would tell them exactly what I did and I watched it go right over their heads.
    There are never any questions about my condition or how I deal with it.
    NO interest whatsoever.
    The lesson I learned though is that ‘changes’ in my daily self pain management routine is always going to put me into a worsened condition.
    I’m learning to accept that now. ‘Accepting having company’ such as their’s was a huge milestone for me in my life with CP.
    I haven’t allowed occasional company (for more than a night or two) in my home for many years. Regardless, it saddened me when they left. My world became far too quiet again.
    @ Jean…I recently ordered a T-shirt with the words IT IS WELL WITH MY SOUL on it! 🙂
    @ Karen…you noted my favorite verse Proverbs 3:5,6
    All is in God’s hands. Amen!

  9. Suzanne Weimer at 7:22 am

    Thank you so much. You put what I and so many others feel ino words so very eloquently.

  10. cindy deim at 11:38 am

    Thanks for writing what so many of us feel.

  11. Angella Anderson at 9:58 am

    Thank you! Your article made me cry because you said all the things that i have felt. My mother had fibromyalgia since before they named it, and back then… the 80’s, she was told it was all in her head. She lived in serious pain, and was on mega painkillers un till she died in July from Parkinson’s. I have fibro and severe arthritis and know exactly what she went through.
    I have a 15-year old son with gastroparesis, ibs, esophageal sphincter issues, as well as anxiety and ocd. He’s been ostracized by his friends because ive had to pull him out of school due to the school not trying to help with his absences. Calling him truant, when he has a 504 plan. As badly as i feel some days, i worry more about him. Its not fair for a kid his age to have to go through all of this….. i will have him read this.

  12. William Dorn at 9:41 am

    Just moments ago on tv a united states senator asked FBI director what he though torture was.His answer was anything that causes physical pain.Then why is it not torture for the CDC to have a guideline that causes physical pain to millions of law abiding americans.Why is this question not being asked of our elected officals.My wife and i are two of the millions who suffer and feel that our goverment does not care.GOD BLESS all of our brothers and sisters that are crying every night.

  13. Jean Price at 8:46 am

    Karen…I’m so very glad you have the grace of faith! And yes, God can get us through many days that otherwise would be so horribly defeating! Having a spouse who stands by you and doesn’t judge you is such a blessing…and I’m sure your husband would agree wholeheartedly! I have a similar history of decades with pain…yet I am so blessed to have my family…and myself…just as whole as ever! I have daunting pain, and my body seems to be deteriorating more each year…yet as the song says, “ALL is well with my soul!” Not because I’m so good at handling all of this…but rather because God IS! Bless you both, and may you continue to find joy and much love in your life!

  14. Rhea at 7:18 am

    Perfectly written. I need to print this! I don’t know where I would be without my husband either. He’s diabetic and he works and takes care of me. I don’t know how I got so lucky.

  15. Hilda Hamilton at 6:37 am

    Thanks for sharing a wonderful article – so true. It is painful that people think you are a hypochrondiac because they do not understand and judge what they do not understand.

  16. Denise Bault at 5:24 am

    You hit the nail directly on the head with this article! Thank you for putting into words what we who suffer from chronic pain deal with daily!

  17. Karen at 4:16 am

    You have hit the nail on the head! Great article on explaining someone living with chronic pain 24/7/365. My husband has had RSD for 30 years. Only our faith has got us thru all these years. I will keep you in my prayers. God Bless you!
    Prov 3:5-6

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