Sometimes I wish my back could bleed on the outside so people could actually see the pain. Silly I know
Yes! I try to act as if I'm not in constant pain, even though I have serious low back, neck and knee pain. My husband often makes me feel that he thinks I'm just lazy and don't want to do chores or hold down a job, even though I have been approved for SSDI (after having to appeal and go before an appeals judge) and have held down a job and kept house and been a good mom all my life! It hurts my feelings so bad! I feel like you and wish the pain was more visible!
I'm pretty sure there are many others like us as well. My son often makes me feel the same! It's good to have a place like this where others understand!
We, on DC, have discussed this issue many times. I believe that we chronic pain sufferers have encountered at least one person in our lives who cannot or will not try to understand our pain and medical conditions. Some people look at us and we look fine, so to them, we are fine. If you don't feel it, you don't get it. I learned a long time ago to tune out negative comments. They come from a place of ignorance about our pain and medical conditions. If you are experiencing this from a family member/caregiver, be sure to take them with you to your next doctor appointment and let the doctor enlighten them on your pain. But, there are a few people who are just simply not caregivers or empathetic. So, the only thing you can do with those people is to try to educate them about your illness/pain. That is the best you can do. I want to welcome you to DC, mennis. I hope you will stick around with us. There are great, caring, intelligent people on this site who totally understand what you are saying because they live with it too.
I know exactly how you feel. I have to use a cushion to support my back and every time the family gets together and I grab a cushion to lean on there is always alot of eye rolling.
I'm sure they think that I am just faking it. I wish I could give each of them my back pain for just a day and see how they like it. I try not to bring attention to myself when around them or if I am having a painful day then I just don't go to the family get together.
It would be much easier if there was a big lump sticking out or yes, blood would work lol.
I feel like it is important to emphasize something that Kathy Hanson said above, "but don't act like you're happy and carefree when you are in hair afire pain. You do not need to act the way others think you should act. That will only depress you and make you resentful." Plus acting as if you are fine misleads those around you to not have any empathy for you. You are suffering and your family needs to know that. They can still have fun and enjoy their lives and as you must also. But it is an important learning lesson for your children to know. And your spouses definitely need to know. Some people will not understand about your medical problems, but there is no excuse for close family members not to understand. That is no way to live.
Of course. And you are not a menace! Lol. I have a disease that doesn't show. People see me in a wheel chair and I don't look like what they expect. People sneer at me when I ride an electric cart in a store. The one thing I remember is that at least it is me with the disease than them. They seem to have neither compassion or understanding. At least I do for their ignorance. It isn't my problem that they do not understand. It becomes my problem when I expect them to behave a certain way. Then I must ask myself what I want from them. Pity? No. Attention? No. And so I consider. When one does the same, they may find their solution. Karen
Absolutely! I can understand exactly how you feel. I've often said if people could "see" the pain I have they'd run away from me, screaming, lol.
If you don't have a wheelchair nor a cane, you must be fine, right? Wrong!
This is a great question, mennis, because we all have been told "You look great, so you must feel great." which is not the case at all. If we smile, we must be just fine, right? If we laugh, or are the least bit happy we must be fine.
For those of us that are on narcotic pain meds, that IS the reason we can smile or laugh, but people don't get it, they usually think we want to get stoned or some other nefarious activity, to be sure.
If your pain were visible for all to see, would it be a bloody mess or something else? Do you suffer from back pain alone, or are there other chronic pain issues as well? Can you describe the pain you endure?
If people could see my pain, it would look like those hideous "chasing" Christmas lights, and the stinging, burning, stabbing neuropathy would be a giant swarm of bees chasing after my legs, and my whole body, really. Some people suffer silently because they fear their own family won't understand! Is that you? Are you misunderstood because of your chronic pain? Also, co-workers can begin to think we are malingerers or outright hypochondriacs! IF they could see the MRI's or the Nerve Conduction Tests, EMG's etc. etc., they would know how bad it really is! Perhaps we should drag our MRI reports around with us, have our co-workers or family members who think we are malingerers, take a gawk at our reports, that may just convince them that we've a problem. My own pain management doctor didn't believe that I was suffering, but after reading my NCT, EMG and MRI, she said to me "There is proof that you are in pain" which sort of p*ssed me off a bit. She also said that along with fibromyalgia and chronic myofascial pain, that I've something called spondylolisthesis, which I've no clue as to the meaning of. I'm terribly sorry, I've gone on a bit of a rant here, I just really identify with your question, yet only from ONE doctor, the rest of them had no problem believing me.
And I do have extended family members that don't understand why I can't move furniture round any longer. So, I guess we are all in the same boat in some ways.
I do hope your back pain improves, hope you have a doc that understands!
Sometimes, even though it may bring on a horrible time of pain, we've just gotta bake the cookies! The joy we get from doing something "normal" - is SO worth the bad time after. If we aren't getting any time on the mountain top, even if just a time or two each year - it makes the time in the valleys so much harder to bear. Bake the cookies!!! - EJ23
Unfortunately, unless you live with chronic pain it is a foreign issue to most people. I have lived with it for the better part of 30 years. 3 years ago I was forced to give up a very lucrative medical profession and I am now listed as disabled. My wife has watched me decline over the years and told me she is tired of being the "caretaker" and told me 3 weeks ago she wants a divorce. It's not that I do nothing around the house, because I do. However, when I overdo it I am miserable for a least one day and usually 3-4. I do not sleep well because of severe pain whenever I role over and then waking fully each time. I refuse opiates and have taken up smoking pot right before I go to bed. (no other time). This has relieved the pain at night and has given me some relief and rest. She has never understood and has been angry at me more than once because I was unable to do some social activity.
Just read this and ya I suspect that a lot of us suffer in silence... not in the beginning but after about 1 year it seems like no one cares or they don't acknowledge that your in pain. What makes things worse is going to the doctor to ask them for help only to be told that "you're healthy" and you should enjoy that. I feel like I was made to be silent, my children need me to be an able bodied father, and my spouse gets angry any time I ask for a back rub. A rash, some blood... scabs ... a little bruising ... something would be nice so that people could understand that *this isn't an act* I do not simply want your sympathy, I didn't want this to happen to me, and I wish I could still do all the things I remember being strong enough to do in the past. I'm 36 years old my mind is still as active as it ever was with ambitious thoughts and dreams. I find it sad that I am left to cope alone because no one can see, or cares to understand what constant pain will do to you & your ability to be the person you were before it started.
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