We have asked to our Community the question “What’s something people don’t realize you’re doing because you live with chronic illness?” and they have shared their thoughts on it. More than 200 users have participated in the question. We have selected few of them and compiled this article.
Here is what community share it with us:
Janice Honaker says: I just smile and don’t talk about my pain or fatigue around family. I’ve learned over the years it’s just easier to put on a good show for a few hours around family and not complain. No one wants to hear it anyway. I have a couple friends I can vent to that sincerely care and understand, so I’m very thankful for them. I should have gone into acting, I’ve become very good at it.
Colleen Geiger-Hays says: I exhale loudly when my pain is horrible as a coping mechanism! My family thinks I am angry or upset and I don’t even realize I am doing it!
Yolanda R. Castillo-Newsome says :I sigh all the time too and my husband gets mad at me for it, he thinks I’m sighing at him….I’ve yold him repeatedly it helps with pain and it just feels goid to take deep breaths, it’s relieving
Lucy Ines ZunMerc says: I realized that I’m not showering daily.Sorry is the truth. ..I’m just in my bed to the kitchen to the couch to the bed…just me and my son . I also realized I’m dressing down to comfortable levels. In not eating much but eating fruits.and oatmeal.etc
Karnelle Booth Brown says: I smile and laugh in front of everyone. People say I’m the life of the party. I light up a room. But inside I’m praying I just make it through and that I’m able to walk from the car to my door.
F’rancis Ewing says: I cry myself to sleep mostly every night. It’s hard for me to do simple things, such as take a shower, get dress or just clean around house, even cook every day. I hesitate to just get out the house. Hard for me being around people, cause they don’t understand .
Nina Mayo Norton says: I don’t want to be social anymore, would rather stay home, and I don’t like people to give me advice on how I need to try every treatment under the sun. I’m done with that I have my own way of dealing with fibro and Im doing the best I can…
Patricia Huntress says: Hesitation toward making any plans or excepting invitations…struggle to accomplish anything productive…purchase prepared meals or easy fix items…own enough sleeping garments to last for weeks…pray at times that I will not wake…
Tanya Cox says: I find myself wearing very loosely fitting close only when I go to work is a bra involved! Lol….oh well….nights r the worse
Robin Mike Mueller says: I would have to say not attending or participating in activities… sometimes you want to so bad your heart aches but your body and pain just want let you. It is very depressing and embarrassing. I hate fibro … prayers to everyone fighting this fight !
Yolanda R. Castillo-Newsome says: I put on a front. Smile as much as I can, joke around and try to find humor any way I can. If I dont, I would be a miserable person and I’m raising a little girl who I want to be in good spirits around. She knows I’m in pain all the time, but she doesn’t need to know if it wasn’t for her I’d probably give up altogether.
Kay Kissick says: As a dance teacher, I try to focus on my kids. Pain has been a part of my life so long. I do my best to move and stretch trough it. I walk every day. My dog keeps me going on that one. I try to focus on breathing (which is also hard because I have mold related lung disease as well) I sometimes wish it was only one diagnosis I dealt with. I have no idea which color support ribbon to wear anymore…or which groups to join and comment in. My pain levels stay between a 5 and 7 every single day. On bad pain days, I stop everything I am doing and allow myself to lay down and sleep as much as I need. There are times it means I am in bed 3-4 days in a row. I get substitute teacher’s for my classes and lose income. Those days, depression gets really bad. I usually talk to my husband when it seems uncontrolled, he is the only person who can bring me out of the dark.
Kelly Daniels says: I tend to make plans like with family/ friends/ dates and at the time I feel ok yeah .. then when it’s that day I find myself canceling because I don’t feel good .. I know guys that want to go on a date don’t understand why I always cancel or my family get together s .. my mom has fibromyalgia and she understands what I go through she’s had it 26 years.. it sucks because I do try but I refuse to push myself or feel guilty for saying I can’t.. you care about me enough you will stick around if not well bye . I mean if you can’t be here at my worst then you can’t be here at my best .. idk it sucks I just stay single lol till a great guy expects everything.. till then I got my Heavenly Father he is who I turn to in my life .. I give my everything to God
Jessaca McEntyre Martin says: Staying to myself, avoiding them for days at a time due to a flare up & being in constant pain. Or canceling plans cause I just can’t bring myself to leave my home or even my bed. They think I’m ignoring them or just don’t like them & don’t wanna be around them when in reality, I would love to do all these things without a second thought!
Mary Mccoy says: Not bathing just not careing about me ,I do What I can when I can.dress down mostly,dont I change close for days at a time,not much personal care like shaveing,,very depressed and down ,only leaving my house one or two times a month for food,in bed 95%of the time
Mary McGowan says: Oh yeah, my boyfriend & Iboth suffer from chronic pain and we walk extremely slow, people get annoyed at us because of it, we try to keep to the side of an isle, but it’s so aggravating, especially when we’re really hurting & you hear someone huffing behind you, I want to scream at them, I keep telling him I’m going to make tee shirts with Disabled person, please use caution when passing! lol
Lisa Lou says: Contorting in my chair all day at work. Constantly, accidentally, banging my chair into the desk, trying to get comfortable. Propping a towel and readjusting the seat, the entire day, trying to find reprieve. Endlessly, moving around, huffing and puffing, grunting, crawling in my own skin, doing everything to not get up and quit, only to end up in further poverty, because I genuinely, cannot STAND, sitting all day any longer. I don’t mind my job, but the pain and severe discomfort, that’s a whole other story. It(the excruciating pain daily) is determining everything these days. Number one thing it has determined is the quality of our lives (kids too). There is no quality anymore. Almost non existent, due to this chronic pain. I cannot get relief or medical help for it.
Jess Van Meter says: Wearing certain clothes, not making or keeping plans, and having a strict sleep schedule. They always seem curious about how much water I drink and why I love cardio so much (love-hate) too.
Kelcey Shelton says: Sitting down a lot. My co worker thinks I should stand for low key procedures and actively tries to prevent me from sitting if she’s in the opertory helping me set up for a patient or bringing something in. It’s getting really old. Especially when my fibro or plantar fasciitis is really bad.
Linda Harding says: planning ahead of time what I can get at a restaurant that is safe for me to eat and that I won’t choke on. I often have esophageal issues and have had even had to have my hubby do the Heimlich in a restaurant bathroom before
Amber Martinez says: I tend to avoid people other than my immediate family. I hate talking about my pain because nobody understands. I was in a horrible car accident last August and now my pain is 10 x worse. I’m literally not sure how much longer I can exist like this.
Delia Gomez says: I don”t really like to be out when I”m not feelng good.I get tired too easily. I used to be able to do alot of things, but now just thinking about it gets me tired. If I try to work in my yard, I will pay for it dearly the next two or three days. it’s hard every day.
Joan Tidmore Tucker Haynes says: Isolated myself from others. They don’t understand why. I got tired of explaining if I couldn’t make a meeting or an appointment and most people do not understand. So better not to disappoint anyone so, I never make plans, for I never know from day to day how I am going to feel, mostly depends on if I can sleep rest good. I haven’t had a complete night of rest in years and just don’t feel like ever talking about my problem anymore , for after all unless you have suffered this monster you can’t relate at all. It’s changed my life drastically from the outgoing fun loving caring passionate person I use to be, to turning everyone away from me because I have closed the door from so many years of trying to explain that now, I live with my hubby, cat and try to share my love for others through my daily posts. I sincerely care and love others, miss them, yet, they judge me instead of trying to understand me and all my pain I deal with daily. I enjoy my cat, flowers, garden and all my hubby’s help for he truly trys to understand and help me as much as he can. This fibro is extremely hard on our spouse that love us, they suffer too for they want us to be well again. Its tragic and horrible and causes me panic attacks too because so much I cannot say have to keep all bottle up inside me. My release of stress comes from God only when I spend time with him praying for help from all my medical issues. Its sad to have to live this way when I am a person of so much love from God that I can only share my own testimony of how God has kept me going when I just wanted to quit through my daily posts. Praying for a miracle as I pray, read my journal and bible daily. Always in God’s timing not mine…when He heals me soon I pray. I pray for all you who suffer alone this terrible desease that changes your life the way you knew it to be and lose people you love for they don’t have time for you or even care that you are suffering. So best to live my life alone without their added stress of ugly labels they put on me when I can’t honestly go meet them.. with no sleep my body shuts down until I can sleep some. Sleeping is not easy with fibro/rls sometime may be two days before my body will rest good. Someone ask me who am I? I said it’s complicated, when I find out will be sure to let you know. Someone ask me about something or someone…I say…it’s not for me to say. One thing you know in constant pain daily never ever judge anyone else. We all walk in our own shoes and many people simply are to eager to jump to wrong conclusions, as why we have to live this way. Only God knows our pain and suffering not even our spouse can feel our pain…yes they can see us, we try to smile and look normal as underneath our skin a raging fire going on and we never get enough of love to heal us and help us from our families because mentally labeling me wrong has caused so much undue stress and mental abuse. If I could would go out speak for all with terrible horrible deseases and first and foremost say, don’t put labels such as unstable, lazy, depressed, etc,… on them that are insulting humiliating and destructive to their well being when they are doing all they can to keep going each day in such intense pain!!! Think I would say…How was this person before diagnosed with Fibromyalgia? Example..Myself. I loved life, going, working helping others, raised my children, home maker, kept my house very cleaned, cooked, did it all had much energy, always involved in school/ church activities/ sports that my children were a part of..etc,.. worked job later as kids got older…no not a lazy depressed unstable bone in me!!! So yeah sure of course I asked for this HORRIFIC freaking fibromyalgia SURE that’s the me you knew right??? Well sorry no the me now is in Survivor mode. After all this time not wasting my breath to explain to you ever again, for your just not getting the picture!!! by jdtth 05 23 17
Michele Hanko says: Smiling through the pain. I smile all the time when I am out and around family and friends. They have no idea how much pain I am in on a daily basis or how much energy it takes to stay positive and smile through the pain!
Debra Ming says: For me it’s moving arms and even then I am moving my legs because they hurt so bad. There are times I think I am rude when they asked me to sit down and I know the minute I do the pain is going to be bad. Sometimes I don’t understand sit stand or even laying down hurts .
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