We asked our community “Living with fibromyalgia and chronic illness” to share the hardest part of living with chronic illness. More than 250 people have participated in the question and share their thoughts with us. We have compiled few of their answers into this post.
Here is what community share with us:
1.Doctors attitudes towards you. Example: treating you automatically like you’re a drug seeker. When the compassion ends at the doctor office, that leads to total depression and isolation. It’s bad enough society doesn’t understand and even close family or friends. But doctors treating us as tho we chose this and that we are a burden on them is absolutely the hardest.
2.Everyone acts like your wanting attention and no one takes you seriously when you say that you can’t do something, or you feel horrible, or your in so much pain that you don’t want to move or even talk sometimes. Then the depression that goes along with not being able to walk or move most days without the help of pain medicines or muscle relaxers. Not being able to plan things and keep them because you know that you can’t ride that far or walk once you get there, and you can’t have a good time with family or friends while your on vacation for dreading the ride or flight or whatever home. Then once you get home it takes a week or two to get back to what little function that you had before the journey. And most of all not being able to hold down a job to provide for your family, which makes you feel even worse because your not contributing.
3. You don’t recognize yourself anymore. Feel isolated and cut off from yourself and the rest of the world. People look down on you for not being better, healthy, fit, successful. They assume it’s all your fault because of a lack of commitment or drive to get better. Doctors too. They play Russian roulette with your health and diagnosis and get upset with you because you’re wanting them to fix it, not put you in a medically induced coma. And all I want to do is sleep. REALLY sleep. Oh and exercise (go for a walk or clean my 1 bdrm apt.) without needing to be in traction for another week on muscle relaxers. gee, I’d just like to feel human again. Not sick & broken
4. Not being able to do my housework the way I used too.And not being able to do all the things with my hubby and grandsons like I used too.My oldest grandson had a baseball tournament today.And as usual I missed it.But after the first game he called too tell me how it went and how he played.
5. It’s the treatment from friends and family who do not begin to understand the struggle living with severe fibro symptoms. Everything from the over all body aches to the unbearable itching and nerve pain in both feet. To not be able to walk in the mall or take a walk in the park.. the simple things are no longer easy but a constant struggle. Only other fibro ladies share in the pain.. no one else can understand. Doctors do not help.. medicines are over priced and rarely help and have adverse side effects on the brain.. sometimes I sit in bed all day fighting depression. My heart goes out to you – all my sisters who have fibro and struggle. I rely on the Lord daily for strength.
6. It’s 24/7 never ending pain. Trying to not completely shut down. Forcing myself out of the bed every morning to go to work so i can pay for the meds I’m now on that do little to help with any of the pain. Exhaustion. Losing myself. Lack of support and understanding
7. Not being able to do thing’s use too. Not being able to clean house n cook. I loved working in retail can’t stand anymore can’t sit very long either n can’t even pick up anything heavier then half gallon milk. Dr’s that say they can help but don’t or Dr’s think your druggy and your not just want something to take the edge off the pain n feel like guinea pig because they want u to try so many different medicines n have to deal with side effects from medicines. People look at u crazy wen u use disability place card but u got it for reason. They don’t understand until they have walked in our shoes
8. Being a burden to those around you. Constant anxiety because you never know how you will feel or what the weather will be like. No wonder our brains are so hyper-vigilant. Not having anyone being there who truly understands and loves you unconditionally has to be the worst tho.
9. The hardest for me is when you are in your down season… Nobody understands and as much as you would like to be active… You just can’t. It could be physical or mental. Because they can’t see it, they take it personal.. I’m at the point in my life whereas friends abandon me in my down season, I don’t care… THERE LOST.
10. People not believing you have an illness. Family and friends who think you are faking it or tell you that “I read about that you just need to exercise and you’ll be fine”
Also not being able to play with my kids and help them with sports or introduce them to martial arts, hiking, and rappelling like I always thought I would get to.
Share your thoughts with us in the comments below. For FAQs, Discussions and support join the Facebook group “Living with fibromyalgia and chronic illeness”