Thank Goodness You're on Disability!

 Aimee...am I suppose to say thank goodness I'm on disability too? I'd like to say thank goodness I'm alive and yes like you said -thankful that at least I can help others through advocacy. 

Now I'm faced with "the disability dilemma". I'm done with my temporary disability and now unemployed and unable to work -- what do I do? Apply for unemployment or Social Security Disability? Applying for unemployment would mean "I am able to work"; which obviously that is not the case. Social Security? a big question mark ...????... would they consider fibromyalgia as a diagnosis for their deliberation; it's not even listed on the qualified disabilities. Do I need now to get a lawyer, and then what ... use my disability money to pay the lawyer? 

It upsets me that I have to prove my disability when we struggle with an invisible illness. How am I supposed to prove my pain when I'm always one to post positive, smily pictures of myself with family and friends. I'm always portraying a positive attitude and never let fibromyalgia stop me from enjoying my time with the people I love. I am the one to say: "I'll have pain here laying on the couch, or out there in the park....then I'll rather be at the park!"

So to those who see the pictures that portray such an "active, happy" life...they might get the impression that I'm not really battling fibromyalgia. When I said, above, "I'm faced with a dilemma" I was referring to this very issue -- should I stop portraying this positive outlook in life with a syndrome, or risk being taken seriously when applying for disability? They might question the credibility of my case. If they send an investigator for my case to follow me, they could find me at the grocery store shopping, walking a long distance to my car, then going to pick up my daughter, bending to hug her, help her get in the car, drive back home to pick up my son and take him to the soccer practice, while I cheer for him in the bleachers.

In the investigator's eyes, I am running around doing regular activities in perfect health --- what he doesn't see is that while I'm at the grocery store, I forgot what I had to buy, my head is screaming with a massive migraine and as I walk with the cart to the parking lot, I am counting every step to get to my car, because, of course, I couldn't park in a handicapped spot as those require an extremely limited walking distance ability.  

And now my legs and back are throbbing in pain like daggers ripping my muscles apart, and then I'm stressing to get to my daughter's in time, having a hard time to drive because my neck hurts to look to the sides or back, my joints hurt every time I have to step my foot of the gas to the brake is a painful shooting pain. I become irritable and anxious while driving, thinking of everything I still have to do, when I arrive at my daughter's school I have to put on a smile for her when I feel like crying, I bend my back in excruciating pain to hug her. Sitting back in that car it's like getting into a torture chamber, the upright sitting position sends shooting pains from my legs to my hips, up my spine through my neck and my head. And I still have to manage to drive back to pick up my son and take him to the soccer practice where I need to fake I am having the time of my life watching him play and cheer for him when what I really want to do is scream in pain.

But of course the investigator can't see that...he just sees the act that I'm putting up for everyone else to see --- including my children, friends and extended family. 

So what am I suppose to do? Stop living my life because I have to prove I'm "disabled"? Instead of posting happy pictures of me and my daughter pumpkin picking, or dining with my friends celebrating my birthday, maybe I should post pictures of me laying on the couch personifying my agonizing pain, with a face of death. Maybe then they wouldn't doubt my disability.

I know I would never say 'thank goodness I'm disabled'. I am not proud of having to apply for state disability or Social Security. I've always been an entrepreneur, always finding ways to keep myself busy, work even when I'm having fun. Being a perfectionist, overachiever, workaholic business woman, wife and mother --- yes, all those roles and add to that the friend that serves as a psychologist from time to time, the entertainer, the social butterfly.  

Yes that was me, the one I'm trying to hold onto so bad and it keeps slapping me on the face with a bad fibro flare-up. Yes the same one that now has to take the back seat and accept the help from others, the same one that now is no longer invited to party unless there are places where I could sit down, the same one that has to say no to activities that involve too much walking or standing for too long, the same one that now wishes she could dance and exercise they way she used to, the same one that now lays on the couch while the husband cooks the meal and bathes the little one ... yes the same one that now is typing with numb fingers, backache and insomnia. The one that doesn't look sick, yep ---- that's me. Thank goodness!!!

Hi Mari,

I think you just said what 99% of us say and worry about at some point or another.   We do have a unique situation in that dilemma of do we act like we feel or act like we have a life?

My understanding is that people are being approved by SSDI and various long term disability programs for fibromyalgia.  Here in Ohio on the private disability program that I'm on (Public Employees Retirement System, I worked for the state), fibro is considered a mental health disorder and I have to be re-evaluated every year. So year in and year out I have to go see a psychiatrist to explain that no, I'm not "just" depressed and yes, I am in pain and unable to do my last job.  It can be humiliating, humbling and hurtful.   But the system doesn't care.

I know of situations where investigators were sent out on people.  My doctor told me about one of her patients having that situation and the nasty letter she got from the attorney for the state and how they asked her to view the tape and then justify her recommendation for disability.  It was hell not only on the patient, but on the doctor too!   Thankfully, my doctor was willing to stand up for her patient; I know some won't.

So what do you do?  I don't know, we each have to make that choice.   In doing all of these things, I assume at some point I'm going to have to justify why I can do these things but can't work.  I know the reason, half the stuff I do at 3 am when I can't sleep, and the rest I push forward because I need to keep occupied and moving forward.   Just like I pushed forward for years trying to keep my career!

One thing I came to realize is that being on disability gives me the opportunity for a life.  When I was working, all I could manage was work and sleep, and I wasn't as effective at work as I would have been when well.  I didn't see my family, I didn't do anything fun, I didn't even go to church.   I worked, I slept.   Now I'm actually able to take care of myself and because of that, I also am able to do some things which contribute to improving health and to society as well, just in a different way.  For me, I refuse to be dishonest about my life anymore.  I did that for years and it's just too hard and too much energy to cover things up.   I don't shout "I HURT!" from my rooftop, but my friends know if they ask how I am, they will hear the truth.   That's also a choice because of my groups and various places where I'm involved with fibro folks, I want them to know that I'm "out of the closet" so to speak and that they don't need to be afraid.

So, I'm not proud that I'm on disability but Mari, WE are the very reason it exists.  You have paid into a system that then should help you when you are unable to work.   It's not a luxury and it's not something you are abusing, it is exactly for you and for this situation.  I think it's deplorable that we have to fight for it, hire attorneys just to get heard and that it is such a humiliating experience.   But I also don't think that's going to change, so we have to find our ways around it.    (As an aside, most attorneys will sign a contract to be paid up to 30% of your lump sum back pay so you won't have to pay a large fee up front.)

Part of my honesty in life is also recognizing that I'll be in pain whether I'm in bed or out doing something, as you said.  And even worse, sometimes in bed as stiffness sets in!   So to be out there helping others in some way, to give myself a mission and a purpose in life, that's what counts.  You are an entrepreneur, look at how within a year of your diagnosis you have already found ways to help others and to advocate!   You still can be those things you said Mari, but to do them within the confines of a set job are impossible for some of us.   I had to let my past dreams go but in the meantime, I'm finding new ones and I will fight the system if they try to use that against me!    You can do the same!!

Take care Mari, I'll be praying for you as you decide what you need to do and as you go through the process!   I hope that one day you may say "Thank Goodness I'm Disabled, because of that, I can help these other people."  That's what I'm realizing slowly, God had plans for me, and it took all the rough roads to get here, but here I am and I will do what I know is expected of me!

Having gotten a really good sleep last night, I'm saying 'thank goodness for my capable doctors'.

Having then clicked on the website to see what is new, as that is 'my #1 priority in life next to being healthy enough to be working for myself creating the website', I only say this: Thank Goodness I've been well enough for the last several years and had all the misfortunes of my past that lead me to the point I was at three years ago right now thinking 'how can I have this education group thing be easier to do for ME, and reach more people, as we all have limited time, energy, and money?'

I think I saw one of the most amazing volleys about fibromyalgia from two of the most talented, smart, and hard working women on the Internet with Aimee Shannon and Mariluz Fontanez, above.  I hope this serves to inspire many.  I want to remind everyone that a year ago or so I set up a Topic (two, actually) about disability in the general Fibromyalgia Forum on Lumigrate.com.  One is for those that have been successful, to give tips and encouragement, and the other was a place for people who are in the process to vent if they need to, among themselves as 'misery loves company'. 

What was VERY CLEAR TO ME in what these two women above me wrote this morning, is what I LOVE about being an occupational therapist -- 'engage the mind, and the body will follow' is one of the foundational principles by one of the foundational people decades ago when occupational therapy was being 'invented'. 

I personally subscribe to the theories of quantum physics and believe that it is a science that explains much of what goes on with integrative medicine and the way the body, mind, spirit of 'integrative medicine' work together to create your health and your reality.  So I commend both Aimee and Mari for their activism within their own body/mind/spirit!  

For what it's worth, seven years ago right now I was in the position Mariluz is in.  I had been told by a financial advisor/counselor 'there is a reason there is bankruptcy, Mardy, and it's for people like you -- look at what your expenses have been -- look at how it has affected your earnings in your career as an occupational therapist these last 7 years -- you went from making as much money as engineers do out of college to not being able to work, yet you are beating yourself up trying to continue working just to pay the bills you have -- which ARE staggering -- you literally need two incomes to pay this off'. 

And then I did just as our smart social worker, Aimee, said in response to Mari -- I went inside my own self to decide what I was to do next.  I accepted an assignment that was pared down from two months to three weeks to help out a nursing home in Grand Junction, Colorado, which was 4-6 hours away from my friends and family in good weather, sometimes days away in bad weather when the snow prevents safe travel. One thing lead to another and .........

And now we're all here, coming together to provide, I WHOLE HEARTEDLY believe, what is going to be the most potent place on the Internet for people with fibromyalgia, chronic pain, and chronic fatigue AND OTHERS interested in creating THEIR own higher health. 

Thanks ladies -- it's I've had my cry for the day, both for all we've gone through and for how proud I am of Lumigrate today. When things like this happen I liken it to how parents feel when their kids are grown and do something fabulous -- they but provided the framework and long-ago base and some ushering more recently, but have such pride. ~~ Mardy

Aimee, what the massage therapist said to you to me indicates she or he might have been one that was not so adept at treating people with fibromyalgia; remember I've worked with PTs who didn't want to take on FMS patients despite the obvious revenue they bring because 'they don't come back, they no show, they're emotional wrecks, the're 'difficult', and it was their lack of understanding of what it was.  So please help me get information on Lumigrate in a streamlined way, keeping it valid but progressive (and sprinking in FUN so MORE people come and visit us a LOT), to fix that problem.  I have great resources who will agree to write and then it's like beating on them to get something from them because unless there is money attached to something it gets put to the end of their list, and anyone good at what they are doing is busy right now. 

As for the doctor at an integrative clinic throwing out the baby with the bathwater, I've done that before as well, because anytime I see something that is sponsored by pharmaceutical industry I remember ALL the things I am aware of that they have done that is basically like the mafia instead of also thinking about how they have created many things that have done a lot of good for a lot of people, myself included, and that we have to TRUST each source, each person, to be wise about what they allow.  If a pharmaceutical company right now approached Lumigrate and said 'we want to sponsor you', as Deirdre Rawlings and others yet unannounced as we're not completed with the process have done, I'd welcome it but they have such cumbersome processes that it won't happen for a long time for Lumigrate.  But I understand from some of my 'collaborators' who do some education now for the pharmaceutical industry, who used to abhor the industry, the industry is changing and so then we all have to change our perceptions, and just like a person gets a certain reputation as a kid for 'having kooties', it takes a while to get that out of everyone's mind and seeing them for what they are 'today'.   Hope that helps!  Thank you SO MUCH for a terrifically inspiring piece, on a number of fronts! ~~ Mardy

In my 30 years of practice in psychology, having worked with thousands of people with disabilities or who are "on disability,” I have yet to meet one who is happy they are in that position in their lives.  Humans are functional creatures who define and measure their lives by their activities.

My experience has taught me that people struggling with chronic pain and illness have a variety of feelings about their situations.  Some are frustrated and angry, some guilty and embarrassed, some depressed and hopeless, and some are focused and resolved.  My job is to help people transcend the label of  “disability” and find potential within the physical limits.  People need time and support in order to make these transitions and thank God we live in a society that provides such support. (Although some in politics would like to move us back to a more Darwinian “survival of the fittest” mentality.) 

When I inquire about a person’s pain level, it is always within the context of their activities (both in terms of what they are doing and what they wish to be able to do) and whether he or she can find a pace in their life that allows them to be maximally productive.  I believe that everyone has something to contribute and that hope is always a good thing.

Chris

Hi Dr. Young,

Thanks for your comments!   I have talked with Mardy often about our shared belief that getting a diagnosis of any health condition usually results in the person having to go through the stages of grief as outlined by Elizabeth Kubler-Ross.    For me, I gained acceptance a long time ago, but I've been at this since childhood, so I don't have memories of pain free days, that's easier to accept for me!

One thing though that became clear recently is that we have to go back through these stages often when new things get thrown at us about our health.   Living with a chronic illness is an adventure!

I've been batting around an idea to write about "good pain" vs "bad pain"!  Sounds like that's very much what you are doing in your sessions in discussing pain levels in context of what and how a person is doing.   I think that's an important touchstone for us to remember!

Thank you for your feedback, it's SO appreciated!

Hi Aimee,

Nice to connect with you.  Mardy has spoken highly of you and your unique insight into the chronic pain experience.  One thing I learned early on in my work with patients with chronic pain is that they are my teachers and that one learns much by listening.  What my training provides me is a way to conceptualize and scientifically explain what my patients are telling me and hopefully provide the tools to help them cope/thrive. I hope to extend that to the people reading and learning here at Lumigrate as well.  

First let me say that my observation regarding the grief process revolving in a person's life is exactly as you describe it.  A colleague of mine once told me that progress in life is not linear and constant, but involves setbacks that, if handled correctly, propel people forward with greater energy.  Kind of like a sling shot around the sun.  Each time we rework the stages of grief we become wiser and stronger, as long as we don't let setbacks do us in. 

Regarding good pain/bad pain, I like to think of it as functional pain vs. dysfunctional pain.  The way in which our brain processes pain consists of two neural tracks.  One is a sensory track which tells us the location of the pain and the other is a motivational/emotional track which provides the physical and emotional experience of the pain.  Each track ascends to different areas of the brain.  The M/E track connects to more areas of the brain and contributes to the suffering involved with pain.  Overstimulation of the pain tracks in the brain creates wear and tear on surrounding areas (particularly the medial frontal cortex) which is involved with our ability to "rationally cope" with the pain experience.  When we struggle in coping, our pain experience becomes dysfunctional.  In other words we "feel trapped" in the pain experience with no awareness of how to escape.  These feelings lead to dysfunctional thoughts and attitudes.  The pain is now managing our lives.

Therein lies the importance of psychological pain management.  People with chronic pain will have pain.  I work with my patients to not fight their pain, but to listen to it, learn from it, and develop a pace in life in which they can continue to be active and productive, but within the limitations imposed by their condition.  This is not always easy to do given the demands of life, but people often find that by learning to set proper limits and boundaries, pacing their activities, finding time for health enhancing pursuits, and obtaining proper rest, they can begin to manage the pain they feel, and thus feel more in control in their lives.  After all, personal control in our lives is what each of us seeks, and that control starts with learning to control ourselves and the manner in which we interact with the immediate personal space around us.

I am most interested in any thoughts and perspectives you and others have on this matter.

Chris

Oh Dr. Young!

You have exactly nailed what years of therapy gave to me!!   I am one of the lucky ones who found a therapist who understood what you have detailed above and helped me move forward in living positively with fibro, not fighting it.   I am incredibly grateful for that and often suggest finding a therapist with these perspectives to help folks come to terms and recognize that we can live a good life even wth a chronic illness.

Thank you SO much!!  I know many folks will find this information very helpful and it's wonderful to have it here!

Thank you Aimee, Mari, Mardy and Chris for a meaningful and timely discussion of this topic.   So many of us have needed to put a positive face on our pain in order to balance our lives- and that doing so truly helps us get through the day.  Chris- your comments on functional vs dysfunctional pain,  psychological pain management and taking control  are right on target! 

Robin

Thank you Aimee and Robin,

My best to both of you.  I look forward to future discussions.  This is a marvelous forum Aimee, keep up the good work.

Be well,

Chris