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.
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).