Everyone talks about the physical side of fibromyalgia, but what a lot of non-sufferers and non-believers do not understand is how much we suffer emotionally as well. Going forward, I will refer to these people as the “nons.”
Try having to live with a chronic illness that no one really understands and that some don’t even believe exist. Try living with the fact that even your own spouse, family, and friends are nons and don’t believe in you, or they feel you are a liar or hypochondriac. Try dealing with the stress that comes with not being able to get medications that help you or doctors who listen to you. Try living a life without your family and friends. These are just a few examples of what the nons do not seem to understand about us.
I’ve spent most of my life feeling frustrated, angry, let down, and alone — all due to my illness. I’ve been frustrated because I can’t do the everyday things I need to do to keep up my house and to take care of myself, let alone what I truly enjoy. I feel alone because I can’t get anyone to listen to me. My friends got sick of me forgetting important events or canceling plans at the last minute due to a flare. I feel let down because the medical profession can’t seem to help me. I am angry that my body continually betrays me. Activities that are easy for the nons are almost impossible for us.
Is it any wonder that depression is a frequent symptom of fibromyalgia? Try living a life that at times doesn’t seem worth living. No matter how hard we try, we can’t win. When we are happy, nons steal our joy by putting us down or by reminding us that we are worthless.
I’ve been accused of being lazy and unmotivated. You have no idea how motivated I am and what lengths I’ve gone to to feel better. I’ve seen more doctors and specialists than I can count. I’ve tried almost every form of holistic medicine out there. Some work and some not so much, but I keep trying because I want to be better.
There are quite a few of us who have low or no self-esteem. How can you feel good about yourself when no one else does?
The worst thing I’ve ever been told is that I am a burden. Wow! Talk about a punch to the gut. No one wants to be a burden. But what our spouses, friends, and family don’t understand is that someday, they may be the one who needs help.
What happens if one of them ends up with a chronic illness or disability and they need our help and support? I, of course, would do anything I could to help. But think about it: If you treat me like garbage, how can you honestly expect me to be there for you, especially when you haven’t been for me?
I wish the nons would try to see our side and actually listen to what we are saying. You can still have empathy and compassion for someone even if you do not understand what they are going through. Just look into our eyes and see our pain. It is there. You really don’t have to look hard at all. You just need to look.
While waiting for the nons to come around, seeing a counselor or attending group therapy can be helpful. Joining support groups and patient websites is a way for us to find friendship and comfort with others like us. There are medications for depression that a physician can prescribe. All of these can be helpful to relieve our depression and emotional distress. But honestly, what would really help all of us immensely is a little empathy and compassion from the nons.
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Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.
You have hit on the exact feeling and emotions I feel. It is direct, concise and accurate. OMG thats our life and why must we beg our loved ones to treat us like they would a stranger that needs compassion and empathy. Some of my close family that I should be able to have support from, do exactly the opposite. They look for every opportunity to say I am lazy, a liar, hypochondriac, a druggy, and oh yea pathetic. Its horrible, we are in pain physically and mentally and emotionally. I say treat me with care and love or treat me as a stranger. Many people treat others with more understanding and help than they do me, why? I have always been accused of being overly giving to my detriment and always trying to help even when I too need help. Its ok because if I can then I will. I so hope they do not have issues as they they get older because I may be appt to remember the times that I was crawling on all 4s and you made fun and laughed and said such cutting words. It was then I needed them most and they turned their backs. Are they in denial? Do they not understand? I dont understand and I am living this. It seems that when I had so much to offer in giving my time, love, fun and money that I was great. I hurt then too but was not totally disabled. I kept on working hard and hurting myself more and more but I pushed on because I needed to and I am not a quitter. I worked for 38 years and was forced by disease to retire. Now I need and I dont add value to their life is what I was told.
Oh btw if someone needs my help and I am able, I will still be the pushover helping until I hit the ground again.
Thank you for opening up this conversation as many of us try to just push this back. I know I do as I cant even believe that some of the people I loved and cared for the most
Have walked away. The most ridiculous thing is I would do it again for them. I am so fortunate to have a husband that has stood by and for me for years and I am and will always do the same for him. He not only says the words but shows me how much he loves me. I have extended family that has respected and helped us when we are bith down and we do the same in return so we can count on each other if in need.
To all my sisters and brothers in chronic pain, may we be blessed with strong characters and understanding hearts, patience and foregiveness. 💜
Everyone is on target, I know some of us are fortunate to have someone who understands. I believed Karyn’s last paragraph kinda covers it all.
“To all my sisters and brothers in chronic pain, may we be blessed with strong characters and understanding hearts, patience and forgiveness.” 💜
Thanks Karyn and thank you Carrie for putting it all on the foreground. My eyes are wider now…
I thank you for your insight into our spaghetti bodies & brains. My primary doc made the statement that he thinks Fibro is a 21st century PMS. If he had not been across the room & me on the exam table I would of slapped the hell out of him. I’ll never understand why “being so smart doctors can be so dumb or too lazy to check it out. Thanks ya’ll & may God bless us w/an ok day tomorrow.
Ditto Karyn…and on top of it all, I now have to be the sole care taker for my invalid 91 yr.old mother. The same mother who berated me for so long. She was a nurse and still has NO understanding nor compassion. Now, I have to wait on her hand and foot like a servant. I’m feeling like a total basket case at this point. She keeps falling (doesn’t follow med.orders on safely using the walker)and expects me to pick her up! I’ve also got degenerative arthritis and herniated discs, yeah, I’m going to pick her up. No money for a nursing home.
You are brave warriors!! Unfortunately others can’t fathom the pain……I’ve tried to explain with comparisons to health issues they may have had independently but then tell them, now ALL those seperate symptoms is what I deal with daily, think about that…they still can’t fathom that we have 101 different issues but all connected, their comment is ‘shouldn’t you be in hospital, if you’ve got all that?’ Well duh, would if we could but…..& then their eyes glaze over!!😞😟😟😡
I could relate to this very very much. Except I have RSD/CRPS and MS.
A few people “believe” MS is real but the invisible symptoms (extreme debilitating fatigue, memory problems, heat intolerance, etc) are ignored or not taken as valid or real by medical professionals and family, alike.
As for RSD/CRPS, which has been recognized since the Civil War, only half or less of medical practitioners I’ve seen know it is real and chronic and presents differently in every patient.