What we need our families and friends to know...

I asked a question on the Facebook page and the response was overwhelming. 

"If you could have someone in your life understand one thing about what it's like living with chronic pain....what would it be?"

I think we all have "one thing" and I think too it's more than one thing. Is that true for you? What do you wish your family could know? 

Now can I ask a question? Why haven't you told them yet? 

Maybe you're saying you have and they just didn't listen...maybe you're worried about what others will think of you if you were to tell them. Both are normal and natural...and not everyone in our lives is going to hear us...and not everyone will accept what we have to say...but does that mean we should stop trying? NO! Does that mean we're not worth being understood? NO! Does that mean what we're feeling isn't real? NO!...BUT...we still need to keep trying and and we need to keep talking.

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I know it's not always easy to talk either. There will be people who understand with little being said and then there are others that no matter how you try to explain...they just can't or won't understand...and that makes it harder to open up...because we often don't know which people are which until we do open up a bit, and it can be a painful lesson at times when we do.

I hoped by asking the question and compiling all the answers, I could write something that would help our friends and family understand what it's like to be us. But you know what? There isn't something I can write that will fix this. Some will understand and some just won't...no matter what we do. But I still think by sharing your responses maybe we can open up the lines of communication just a little wider and maybe... just maybe....we can start changing things.

So here it is...the compiled list of everything you wanted your family to know...show it to them...talk to them about it...share the things that really speak to you and let them know this is what YOU need. 

If you could have someone in your life understand one thing about what it's like living with chronic pain....what would it be?

1. That I'm not exaggerating that my pain is real and that I would never wish this even on my worst enemy
2. I normally say acute pain is you break a leg it hurts a lot but psychologically you know it will alter and go eventually....now have the pain and it never goes every day 24 hours a day and you have to get on with your usual life anyway........
3. I did not wake up on the wrong side of the bed. I am not overly emotional. I can only do so much before my body shuts down. I have no control
4. The loss of freedom is the worst for me things I took for granted I have trouble doing I just want to cook n clean n buy my own groceries.
5. That I am to be revered and admired for my strength and courage, but also never forget just how fragile it ALL makes me.
6. That it changes our temperament because we're already under the gun in our own bodies, so everything and anything can top us off
7. To understand some days your entire body hurts and you still try to get through the day
8. That I'm not "faking it" for attention
9. That my pain is sometimes inconvenient and I do not do it on purpose
10. The one thing I would like my family to know about me is my pain and how strong I really am. Having an invisible illness is difficult in the aspect that others do NOT see your pain and assume that you are doing well, but the truth is - I am not. I am suffering so deeply but want to live my life and in order to do that, I must hide it all away until such time that I am at home and comfortable enough to "let it all out." It takes great strength to do that and I wish they knew....
11. Getting shots in my low back and neck been 6 shots so far it work only 2 weeks for me now I have to back to pain management to see if a different kind of injection I could get that would work and I understand that its just to take the edge of pain of my shoulder !! But its hard to live with chronic pain your mood change and cant do all you can do all the time
12. I don't know where to start
13. Just because I don't look sick doesn't mean that i'm not mentally.
14. Taking an Advil does not get rid of arthritis in my spine no matter how many times one suggests it.
15. That even talking on the phone sometimes is so exhausting i need a lie down never mind in person 
16. That I have incorporated it as part of my life. I need to make it easier on myself. In pain 24/7 is no easy task. I have FMLA for those unbearable days. I also have a support system like no other.
17. That if I'm having a good day, it doesn't mean I have the ability to change the bad ones, nor are they all "in my head".
18. I don't want to be in bed so much. More than anything I'd love to scrub and clean like before, plan in my yard, taking pride in my plants and all the hard work I've put into them in the past. It isn't all in my head and I'm not being lazy beccause I spent 3 days in bed. I hurt and I can't help that it is too hard to move.
19. Just because I look good on the outside doesn't mean I am not ill hurting dealing coping struggling on the inside. AND please take me out of box of damaged goods AND illness does NOT = dumb ignorant or uneducated .......I know you said one but um it felt good to share. Thank you! when I say look good I meant I put make-up on and comb my hair
20. Just to respect and believe in me, with what I feel as a human being.
21. Even though I'm smiling . I still hurt 
22. That I no longer see my chronic pain as a burden, and neither should they. I've come to grasp with the cards I've been dealt, and while I need them to show understanding and compassion I don't need their pity or for them to judge what they don't know
23. That I feel like I'm going ABSOLUTELY crazy
24. That sometimes, even when the body is not in pain, the heart still is. 
25. The lack of contentedness or relative comfort in the daily tasks
26. I am really not a cranky person...
27. That I'm not lazy or antisocial, when I don't feel good or if I don't get enough sleep I could get really sick or have a seizure.
28. That it may look like I'm coping but any deviation from the usual plan can make it far harder to cope
29. I have a list of things. I want my family to stop telling me it's always something new, or implying I'm lazy, or its in my head, or I'm fixated on me, that I can't get past denial myself so shut up. Don't tell me I'm a bad mom now, that I've lost it. I have fibromyalgia, neurosarcoidosis, and sarcoidosis and I just had my 5th surgery yesterday and spent the last year of my life in a wheelchair and was in the hospital from Sept to the end of December and tons of therapy to relearn to walk but yup it's in my head. Just support me. I feel enough guilt myself that I don't need it from them. I used to run circles around them. Now look at me....
30. That just because I don't mention my pain every 5 mins, it doesn't mean it's stopped hurting. That every movement can be agonizing, and if I am just laying down all day, it certainly isn't because I want to, it's because I have no choice. I'd much rather be out there, dancing, running and living life the way I'd love to x
31. I completely agree with all of the above and don't know that I could say anything any different. I don't mean to be lazy or come off as mean or impatient, but I think that you guys were more eloquent than I was.
    

And when the question “what does someone with a chronic illness look like” was brought up…here is one response by a reader….

I had someone once say to me that I don't look sick because I take care of myself (hair and makeup done). I couldn't help but to laugh at them. I did tell them that maybe if they saw me at home on my days off then maybe I'd fit their ideal of what a "sick" person was to supposed to look like. I've asked a few people that exact question over the years. Most don't realize that I have all the medical issues that I do. I'm a single mother to 5 beautiful kids, work 4 days a week as a bartender, and pretty much I do it all with some help from my mother. I don't have the choice to let my illness and medical issues get me down. I have to keep going, every day, whether I'm at an all time high level of pain or not. My babies are my drive; I am able to strive as I do because of them. I used to feel the need to apologize for not fitting what society seems to think the norm for someone that is sick, but I don't anymore. Instead I just use that criticism as a fuel for making it through every day. Guess it's a personal thing to me to be able to prove them all wrong, lol.

Thank you for your help in compiling the list and I hope it will help you to open the lines of communication with those you share your life with.

Please...take good care of you and each other...and start talking

Tammy