For me it's jealousy. I wish I could do what everyone else can and I know they don't take me as seriously as everyone else. I'm envious of what my life could be without it.

Those around me not understanding how bad it really is.

The two hardest things for me is being left out of activities ever since I was little because of my pain and having my pain be invalidated because I'm not in a wheelchair or crutches.

I think for me it's being young which makes it really hard for people to understand I'm not getting better. The changes day to day I think are potato of this because some days I'm fine/ seem fine whole others I can't get out of bed.

The unpredictability is the hardest part for me. Sometimes I know I'll have a really bad day because I did too much the day before but other times I've been careful and I still get hit with really bad days.

No support, care, love. Always being sick and in pain, constantly

Yes hardest part no one wants to help,even care my husband he those hints when I have be in bed no one care how we feel.lonely feeling.

No support, care, love

Trying to get around. School wasn’t designed for disabilities. There are very few ramps in the school and it feels like all of the able-bodied kids like to crowd them. Some days I feel like I have to make the choice between being late or being in pain and it’s just not fair

Isolation. I used to say "lack of understanding from others", but honestly, heck with them. I now refuse to keep relationships with people who refuse to try to understand. They could understand if they wanted to. Go find the people who work to understand you & support you, and leave the rest behind in the dust!

For me the hardest thing is that I can't predict and control when I'll be in pain. It's hard to plan things not knowing if and when I'll be in pain. It makes me very anxious and even when I look forward to something fun and I worry whether I'll feel ok or not..

I started my first day of work at a bakery yesterday and I was excited to begin, but it was too much for my chronic pain and I'm already in a lot of pain and I just woke up. I am going to have to quit my job...

@Teddy_Bear I feel you on that one, I work at a bakery part time and it's so painful. I hope you're able to find work that's more manageable/adaptable for your pain.

I feel a lack of understanding from doctors. There are some meds that I can take and that's it. Whenever i ask them if there is something new i can try or do I get the answer that it is what it is and I just need to learn to live with the pain.

Finding health professionals listen and take concerns seriously. I also have a wish to not be written off as a dramatic or head case of a woman. Not having anyone believe what you say or how you feel at any given time is frustrating. Having people judge you and your lack of household skills is also so frustrating. There is so much more but I am sure people understand what I am saying. 😥

The hardest thing are the surroundings. People around me just can’t understand why I always complain and my life surrounds my meds or alternative treatments.

Good days and bad days. 😥

The fatigue because I hurt so much I have no life. I hate it so much. I want my life back

Being told I'm too young to have chronic pain and I'm lying for attention. The pain itself is bad but being told I'm lying hurts more sometimes. My back hurts 24/7 but because I'm not crying out in pain (because it's been years I've adjusted to just dealing with it) that I must be lying... So not true

The fact they are so nonchalant about your care if it were their family the health care professionals son daughter they’d fix them up

Its a tie between being extremely limited in what I can do in a day and the difficulty of getting a diagnosis.

For me it's the exhaustion and the loss of the things I used to be able to do. I'm extremely lucky that I DO have the support and care from my family but even so it's still very lonely.

I definitely resonate with just about everything others have mentioned. But I think the hardest thing for me has been trying to find a balance between basically becoming a hermit so I don’t trigger more pain and going to events with my wife so she isn’t always doing things alone as well. I recently went to a high school football game with her (she’s a teacher and my son also wanted me to come and watch with him) but honestly after about 15 minutes in the stands, even with very padded bleacher chairs, my low back and right leg were killing me! Luckily we sat next to some of her friends so she was able to talk with them some since I was basically shut down coping with the pain until half time when I left. Later she asked if I was mad at her for talking with her friends or something because I was very quiet and looked mad at the game. So I made sure she knew I wasn’t mad at her at all & I was just trying to cope with the pain. So for me there are two things that are lately the hardest: trying to remind myself that my wife has also suffered loneliness during these past 7 years of pain & even after those 7 years she still doesn’t get that I’m just trying to cope with the extra pain and wasn’t mad. But I guess that’s also part of the problem with the invisibility of our afflictions. Our methods of trying to cope with amounts of pain that would put most anyone around us on the floor screaming look, to others, like we are just quiet angry people. I guess in truth we often are in those situations, but it’s because of the constant torture most all of us live in all day, every day.

Feeling neglected by the medical community and being gaslit by them. It’s abuse. I don’t feel taken seriously. The cost of pain management being astronomical as well. The lack of hope I feel bc it seems like no one is trying to study it to end it or treat it properly. I would do anything to make it stop. I can’t just “endure” it, I need to be able to work to get out of the cycle of poverty being disabled has put me in.

That I tell these doctors that I’m in extreme pain everyday and they either say “we did as much as we could” or “there’s not much we can do”

Self pitty