The invisible disability

Hi there @dabbs, and all -
Great conversation, David - this is a topic I've lived through, and like yourself and @sueinmn - with work, I have come out on the other side.
I'm passionate about this topic so I'll try not to go on and on but make no promises. 😉

I had the benefit of being helped at Mayo's Pain Rehabilitation Center. Here is a patients account of the program. It gives a whole perspective on how much is tackled in the program to help the whole person:
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https://patient.practicalpainmanagement.com/resources/pain-self-management/time-mayo-clinic-pain-rehabilitation-center
We are complex humans and we need a complex approach. We weren't wired to immediately know how to deal with change, disaster, "invisible disabilities" and know how to rebuild from them. Sometimes we have to learn, like kids, and we have to parent ourselves in order to be open- minded and possibly re-learn what we thought we already knew. Once faced with permanent physical changes, emotions and behaviors begin to change from fear, anxiety, anger, depression - all common sense goes out the window and that's ok, for a little while anyway. We have remember to give ourselves grace along the way because it's a challenge.

It's easy to feel slighted because no one can see our "invisible" disability and how we suffer... I was there in my B-Life and it was an ugly, draining place to be, and I knew better. I knew it was a "ME problem", no one else's, and I was only hurting myself by being in that negative space - I just did not know how to get out of it, there was no map, no directions.

Figuring out a plan is the next challenge. How do I help myself? Might it be a rehabilitation center, day programs, cognitive behavioral therapists, social worker, self-help apps, PT and exercise programs, dieticians, bio-feedback, group therapy? There are endless resources out there. Where do you start? One step at a time. Little things like David mentions, helping others, giving back, volunteering, but we can't forget to help ourselves first. We can't run the car on an empty tank with faulty wires and no oil.

I'm grateful that I worked hard and willed myself to go to the 3 week pain rehab program at Mayo. Here's what I learned and I hope it's helpful -

A-Life: could do anything and everything, overachieve, control, leader

B-Life: confusing, painful, anger, loss, grief, limitations, anti-social

C-Life: stable, moderate, flexible - with work and acceptance, joy, freeing

If you chose to become an "active participant" in self-care and work on finding acceptance to live your C-Life, you can move past not caring about who can or can't see your invisible disability. You can grieve your losses, and move on, You can find forgiveness of doctors or circumstances out of your control that you can't change, and move on. You can forgive yourself, and move on. Holding ourselves captive only hurts us more. Freeing our minds allows healing and less stress for our bodies and symptoms. Acceptance does not come on it's own nor does it come easily, but it can come - it's up to each individual to self-advocate, problem solve and strategize. It was hard work getting to a C-Life and has gotten easier over time, but living with chronic conditions requires constant work and lifestyle change.

A-Life was incredible and I miss it, but it's never coming back
B-Life was hell - embarrassing, draining, and I never want to go back
C-Life is stable, moderate and flexible - I understand that life has been re-shaped and is still worth living

Dang it all - I did it again, I went on and on! Hopefully someone finds value in what I shared. There is hope, there is joy. The glass can be half full, not empty, but you have to get after it. Reshaping mindset is a good place to start.

Today, I find distraction by helping others. I used moderation and typed this post in increments to avoid a push/crash. Time to rest now. I gladly welcome feedback and ideas of what has helped you overcome and move on. Stronger together, right?

Rachel, One reason I started this thread “ invisible disability “ was mainly to bring awareness to this disability. Sue mentioned other illnesses such as breast Cancer, Diabetes,etc..etc.. The majority of these have large associations that raise funds for research, trial groups, and community awareness. That’s where our issues are usually put in a closet and opened up only when necessary. I’m very aware of the help other organizations get and give. A lot of us have to jump through hoops trying to find help. So many closed doors or MDs that run out of ideas. Example right now would be why are surgeons still doing spinal surgery ( unless life threatening) when they know that resources for that patient have little options? Or when that patient is deemed total and permanently disabled by Social Security and given 1200.00 a month to live on, given Medicaid and basically told good luck. That was the intention I was trying to open. Yes, for the most part I’ve hit the acceptance stage and will face the next chapter depending on what they will do next without worry. One reason I advocate for pre surgery counseling for spinal patients. I agree Mayo has superb care. I’m fortunate that I have one 5-10 minutes away and in my prior life have transported 100s of patients to the one in Jax. Especially Strokes, and active MIs. The team is already waiting for your patient at the rescue entrance as time is valuable for these patients. You got me started lol. If anyone is having a pity party, I recommend that you take the time and go to a special Olympics event ! Talk about trying? These young people are busting their butts. I volunteered many years in my prior life and these kids will inspire anyone….David

Rachel, One reason I started this thread “ invisible disability “ was mainly to bring awareness to this disability. Sue mentioned other illnesses such as breast Cancer, Diabetes,etc..etc.. The majority of these have large associations that raise funds for research, trial groups, and community awareness. That’s where our issues are usually put in a closet and opened up only when necessary. I’m very aware of the help other organizations get and give. A lot of us have to jump through hoops trying to find help. So many closed doors or MDs that run out of ideas. Example right now would be why are surgeons still doing spinal surgery ( unless life threatening) when they know that resources for that patient have little options? Or when that patient is deemed total and permanently disabled by Social Security and given 1200.00 a month to live on, given Medicaid and basically told good luck. That was the intention I was trying to open. Yes, for the most part I’ve hit the acceptance stage and will face the next chapter depending on what they will do next without worry. One reason I advocate for pre surgery counseling for spinal patients. I agree Mayo has superb care. I’m fortunate that I have one 5-10 minutes away and in my prior life have transported 100s of patients to the one in Jax. Especially Strokes, and active MIs. The team is already waiting for your patient at the rescue entrance as time is valuable for these patients. You got me started lol. If anyone is having a pity party, I recommend that you take the time and go to a special Olympics event ! Talk about trying? These young people are busting their butts. I volunteered many years in my prior life and these kids will inspire anyone….David

You make sense, and I join you in frustration over the fact that chronic pain, whether it be from non-pre-counseled surgery, failed surgery, or other conditions, has no real medical lane and backing. After going through my ordeal, and watching my mother go through hers since I was 8, the facts were obvious...unless you want more meds, procedures or surgeries from specialists who stay in their lane, you are on your own to learn, self advocate, self-care, and problem solve for the future. Chronic pain, I believe is one of the number one disabilities in our country - hence the opioid battle which is proof enough that a lot of work needs to be done. Lanes need to shift towards education, providing care and options for long term health management, and insurance coverage for such care. It would be incredible if health care teams would be in place and programs like Mayo PRC be the norm not the exception.

What can be done? I'm glad you are advocating for patients to receive pre-surgery counseling. What advice or knowledge do you have for patients that you wished you had received?

You make sense, and I join you in frustration over the fact that chronic pain, whether it be from non-pre-counseled surgery, failed surgery, or other conditions, has no real medical lane and backing. After going through my ordeal, and watching my mother go through hers since I was 8, the facts were obvious...unless you want more meds, procedures or surgeries from specialists who stay in their lane, you are on your own to learn, self advocate, self-care, and problem solve for the future. Chronic pain, I believe is one of the number one disabilities in our country - hence the opioid battle which is proof enough that a lot of work needs to be done. Lanes need to shift towards education, providing care and options for long term health management, and insurance coverage for such care. It would be incredible if health care teams would be in place and programs like Mayo PRC be the norm not the exception.

What can be done? I'm glad you are advocating for patients to receive pre-surgery counseling. What advice or knowledge do you have for patients that you wished you had received?

And when pain escalates, and you need to take an extra dose, you risk running out and then the pain really increases. You are considered a « drugy ». Pain medication relieves pain if you have it and the relief is not a drug high. People taking pain medication that have no pain are the problem but those is pain are paying for it. The next problem is that the pharmacies often run out and take days or weeks to restock. By then, the one in pain is in severe difficulty, even a doctor can’t help.

It’s actually worse than that. It’s not that pharmacies run out. They are only allowed to have a certain amount available. True that addicts have put a dent in that but even that was going on in the 80s. Now that fentanyl has been put in the equation, officials had to act due to the amount of overdoses.