The invisible disability

Posted by dabbs @dabbs, Mar 2 3:32pm

How many of us with the invisible disability as chronic pain have been ran over? To begin with I will never discourage support of any medical causes such as ALS groups, cancer research, breast cancer research etc..etc.. but how many groups are there for chronic pain? Other people look at us and judge us for things that are out of control. We’re classified as drug seekers, don’t want to work seekers etc..etc…Hopefully one day there will be an organization that recognizes it. How many of us have laid in bed in severe pain unwilling to go to the ER due to knowing your insurance company will deny coverage making you 100% responsible for the entire bill ?

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Hi @dabbs, I have been in a few accidents but have never been run over so I feel very fortunate not to have chronic pain. I do have friends in the club though and I know it's not easy to cope. I'm not sure if this might be helpful for those with an invisible disability but thought I would share it anyway in hopes that it will help someone.

— U.S. Pain Foundation: https://uspainfoundation.org/

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John, being run over was a metaphor lol. What I was basically asking is very few people recognize “ invisible “ disability…..David

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@dabbs

John, being run over was a metaphor lol. What I was basically asking is very few people recognize “ invisible “ disability…..David

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Did you see the Invisible Project – https://uspainfoundation.org/invisible-project/

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@dabbs

John, being run over was a metaphor lol. What I was basically asking is very few people recognize “ invisible “ disability…..David

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Hello David – Yes, there are many of us, on Mayo Connect and elsewhere who have "invisible" disabilities, and often feel forgotten or ignored.
In addition to chronic pain, I have a relatively rare lung disease called bronchiectasis, which makes it difficult to breathe well, makes me susceptible to a number of difficult to treat lung infections – and between the two, I often "hit the wall" and have to slow down or stop – even though I look perfectly fine, and may have felt fine a few hours ago.

Other invisible diseases that are often ignored include diabetes, heart disease, hearing loss, chronic leukemia or cancer, kidney disease, deafness… Many of us feel ignored, forgotten or discriminated against.

That is why this community is so important to me. I feel understood, I get support (or a nudge) when needed, I learn from others, and together we can learn to advocate for ourselves.

Have you ever considered looking into a comprehensive pain management program or clinic? It was not easy, and I had/have to do the work to live and progress, but it changed my life.
Sue

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It is good to hear someone who understands about others not able to see that I have 24/7 pain.others think I'm just fine….I am not! My coping is better with mindfulness and a meditation tape.i try never give up . Pacing my activities helps.

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@sueinmn

Hello David – Yes, there are many of us, on Mayo Connect and elsewhere who have "invisible" disabilities, and often feel forgotten or ignored.
In addition to chronic pain, I have a relatively rare lung disease called bronchiectasis, which makes it difficult to breathe well, makes me susceptible to a number of difficult to treat lung infections – and between the two, I often "hit the wall" and have to slow down or stop – even though I look perfectly fine, and may have felt fine a few hours ago.

Other invisible diseases that are often ignored include diabetes, heart disease, hearing loss, chronic leukemia or cancer, kidney disease, deafness… Many of us feel ignored, forgotten or discriminated against.

That is why this community is so important to me. I feel understood, I get support (or a nudge) when needed, I learn from others, and together we can learn to advocate for ourselves.

Have you ever considered looking into a comprehensive pain management program or clinic? It was not easy, and I had/have to do the work to live and progress, but it changed my life.
Sue

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Sue, before and after surgery I was sent to pain centers where I received injections with no luck. Then was sent to another Pain management office. 2 weeks later he closed his office after Florida passed the medical marijuana law. I even went and got my card and tried it but didn’t like the effect of it and haven’t used it since. My Pvt MD can only write RXs for Flexeril. I won’t take anything stronger. Mar 10th is the 4 year anniversary of my father’s death who was hit head on by a mid 20 year old OxyContin addict driving a full sized GMC 4 x4 at 90 mph and my Dad in his Chevy GEO who was doing 30 mph. So no I won’t go down that road. I was tolerating the pain until early January when the old pain increased and new symptoms began. A new CT showed severe degeneration of the atlantoaxial joint so now waiting to see how they’re going to treat this problem. But no, I won’t let this get me down . I enjoy talking with other members here as they understand this journey as well. My wife of almost 45 years is my priority and I’ll never become a burden to her. I was 18, she was 17 when we got married and have never been apart. I started this discussion to see how many of us have had to jump through hoops just to see a MD. My wife is to young to retire, I was medically retired at 56 and still a couple of years away from 65. The cost of medi gap plans are unaffordable until you hit 65. I’m under my wife’s insurance and dealing with her insurance company will have you taking blood pressure meds lol. …David

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@dabbs

Sue, before and after surgery I was sent to pain centers where I received injections with no luck. Then was sent to another Pain management office. 2 weeks later he closed his office after Florida passed the medical marijuana law. I even went and got my card and tried it but didn’t like the effect of it and haven’t used it since. My Pvt MD can only write RXs for Flexeril. I won’t take anything stronger. Mar 10th is the 4 year anniversary of my father’s death who was hit head on by a mid 20 year old OxyContin addict driving a full sized GMC 4 x4 at 90 mph and my Dad in his Chevy GEO who was doing 30 mph. So no I won’t go down that road. I was tolerating the pain until early January when the old pain increased and new symptoms began. A new CT showed severe degeneration of the atlantoaxial joint so now waiting to see how they’re going to treat this problem. But no, I won’t let this get me down . I enjoy talking with other members here as they understand this journey as well. My wife of almost 45 years is my priority and I’ll never become a burden to her. I was 18, she was 17 when we got married and have never been apart. I started this discussion to see how many of us have had to jump through hoops just to see a MD. My wife is to young to retire, I was medically retired at 56 and still a couple of years away from 65. The cost of medi gap plans are unaffordable until you hit 65. I’m under my wife’s insurance and dealing with her insurance company will have you taking blood pressure meds lol. …David

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David – I was referring to a comprehensive pain management program – not a "pain clinic" that tries different drugs.
You can read about Mayo's program here, but many other places offer them.
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
Mine was a local outpatient program, overseen by a pain management doc, in conjunction with PT and counseling. It was and is hard work to stay in a reasonable zone, but it got me back to really living…
Sue

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Sue, sounds great. Right now I’m on a wait and see status until I find out what’s next for the latest issue.

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@dabbs

Sue, before and after surgery I was sent to pain centers where I received injections with no luck. Then was sent to another Pain management office. 2 weeks later he closed his office after Florida passed the medical marijuana law. I even went and got my card and tried it but didn’t like the effect of it and haven’t used it since. My Pvt MD can only write RXs for Flexeril. I won’t take anything stronger. Mar 10th is the 4 year anniversary of my father’s death who was hit head on by a mid 20 year old OxyContin addict driving a full sized GMC 4 x4 at 90 mph and my Dad in his Chevy GEO who was doing 30 mph. So no I won’t go down that road. I was tolerating the pain until early January when the old pain increased and new symptoms began. A new CT showed severe degeneration of the atlantoaxial joint so now waiting to see how they’re going to treat this problem. But no, I won’t let this get me down . I enjoy talking with other members here as they understand this journey as well. My wife of almost 45 years is my priority and I’ll never become a burden to her. I was 18, she was 17 when we got married and have never been apart. I started this discussion to see how many of us have had to jump through hoops just to see a MD. My wife is to young to retire, I was medically retired at 56 and still a couple of years away from 65. The cost of medi gap plans are unaffordable until you hit 65. I’m under my wife’s insurance and dealing with her insurance company will have you taking blood pressure meds lol. …David

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Love this post. You're attitude is great considering what you're up against. I have some things to learn from that. My neck has been a problem for 60 years now. My wife is older at 72 and is being treated for breast cancer. I'm 100% with you.

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Tim, If you’ve read some of my threads you’ll know my first year was a pity party along with pain which I tried collecting beer cans during those days to drown out the pain and depression. One day I said to hell with that kind of life and pulled myself out of that deep hole. And THEN I got busy. I either sold or gave away things I knew I could never use again. Out went the surfboards, Golf clubs, and other misc items. I donated half my guitars to the underprivileged and actually felt good about that. Then I redid my garage. Yes, I was in pain but after awhile my body accepted it. During this period I started reading the Bible more and on the bad pain days where I couldn’t get out of bed, I would lay there and think of the pain that Jesus Christ went through to die for my sins. Afterwords, my pain wasn’t as bad as I thought. No I don’t typically preach during my threads but that was how I coped. Yes there are still days I over do it and pay dearly lol, but I know what to expect. Following my latest CT and unsure of how they will approach it , is just a wait and see. Regardless Worry is a waste of energy. It is what it is. Sounds like you have your hands full and I’ll pray for your wife and you. Hang in there my friend !….David

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