'A Patient Voice' Community

I've stopped trying the change public attitudes regarding my or
others chronic pain. If you're fortunate enough to have people in
your life, who may not understand, but they can at least relate
on some level, to the pain that you're experiencing.
There are compassionate people out there. It's taken several
years, for my family to understand, that my chronic conditions,
are not "in my head". They are real. This also includes some
doctors opinions, over the years.

Only God can change public (individuals) attitudes, towards
the chronically ill. I have COPD, degenerative disc disease,
arthritis, aspersions, resulting in constant pneumonia, a
hiatul hernia, high blood pressure, and to top it all off, I'm
bi-polar.
There are alot of people in the past, who have had the opinion,
that I don't look sick, so I must not be.
As the old saying goes, Unless you've walked in my shoes,
you don't have a clue.

People do not know the power of pain. Doctors I have interviewed have admitted their biases against those who experience chronic pain. I guess we change public attitudes one at a time. Keep going. I wish you the best.

R.

Chronic pain is very isolating, and that can enhance the depression that often accompanies chronic illnesses. I have fibromyalgia and osteoarthritis (including severe degenerative disk disease), and also suffer from depression, anxiety, GERD and a hiatal hernia, asthma and allergies, hypertension, diverticulosis. I also had Grave's disease and am now hypothyroid and being treated with synthroid, since they had to destroy my thyroid with radioactive iodine. Mostly I'm in daily pain and chronic fatigue, and suffer from some brain fogginess and memory issues. I've been fortunate to have a primary care physician that is younger, modern in her education, and supportive of referring me to specialists (encocrinologist, rheumatologist, chiropractor, spine specialist. allergist, etc.) And my mother, who lives with me, is very understanding. I also have a friend with R.A. and another with depression who relate very well and are empathetic. Unfortunately, my daughters (ages 19 and 30) do NOT understand despite my attempts to educate them, and are often short-tempered and impatient with my chronic symptoms and how much they limit me socially. I am 51, divorced, and have to work full-time to support myself and my youngest daughter. On workdays, I "spend" all my energy just getting through my 8, 9, even 11-hour workday as a college recruitment coordinator and course scheduler. My girls don't understand why I don't have the energy to go shopping with them after work, why I have to sleep 10 or 11 hours weekend nights to just catch up, and my oldest thinks I am not interested in her upcoming wedding because I don't have the energy or stamina to attend all sorts of wedding fairs, go shopping for gowns, etc. I do my best but need to rest on weekends just to survive. Chronic pain and fatigue are so limiting, all-encompassing, and redefine who you are, and sometimes even those closest to us don't understand or worse, think we are faking or exaggerating. I don't know if I can find the strength to push through for another 11 years until I can retire. And yet I must. But it's nice to know there ARE those suffering from chronic illnesses, pain, and fatigue on a daily basis that DO understand. I wish you all the strength to get up out of bed tomorrow and do it again for just one more day.... and then another.... and then another.... I understand and admire your courage and determination.

I call it the YDU Situation, You Don't Understand. I have taken to just saying YDU when someone starts in about 'but can't you just...". Um, no, I can't just eat a sandwich, take a nap, and power through, and I don't care how good I look, I only have rosy cheeks because I am running a slight fever at all times! My family and friends still press, still say stupid things, and I just hold up a hand and say YDU and then get on with things the way I have to do them. It saves a lot of frustrating discussions and endless explanations.

If there is anyone who has courage and determination, it is you. It is certain to me that you have tremendous faith.
As Matthew says:11:28-29
Come to Me, all of you who carry heavy burdens, and I will
give you rest. Take My yoke upon you. Let me teach you,
because I am humble and gentle, and you will find rest for your
souls.
May God Bless You

All of the post here are so true.I was a vibrant,hard working/playing 50yr old until a fall changed my whole life,broken neck,4disc unrepairable-led to fibro.& pain that never ends.Meds that hurt more than help. Also because a lot of us do not have ins.to pay for meds we use what we can afford,even if it does not do a very good job.
All this while gaining 70lbs on steroids.Lost the weight,but looking at me you would never know that I have all these problems. I have slept in a recliner for last 4yrs until a good friend gave me a hospital bed.First night I managed to sleep more than 3hrs at a time.And while it is better,I still can not sleep w/my husband of 36yrs,laying down is torture,so that isolation makes me so sad too.Our home is so that I have to have the hosp.bed in living rm.as our bedroom is too sm.
Even clothing is a source of pain.Bras if you are endowed at all become torture,especially if you have such terrible pain in your neck that radiated across your shoulders&down your arms & back.
The medical community or should I say some Drs.understand,but if you are a woman over the age of BEAUTY,A LOT of male Drs.treat you like crap,attributing everything to your age. I was going to same Dr.I knew for 20 yrs and then everything I went to see him about he would say oh its just cause you are getting older.Yet my husband goes to him and gets treated like a king.When I broke my neck he sent me on my way with nary a finger put on me or xray.telling me I was ok cause I was moving my head.
I had my files sent to a new Dr the next day.This is my best advice if your Dr does not take you serious seek one who will listen to you.If you have a pain,you deserve to be treated with respect.
If I had been treated right away I probably would not have ended up as bad as I became,I truly believe that the fibro is a direct result of unchecked pain,continuing to work way past the point of no return.Working while you legs swell to twice there size.etc....
I thank the good Lord that I have my husband,without him I would not have survived.He takes care of me,works a 8hr(hard job) drives hr a day to work. But the feeling that we are letting our family down because we have always worked a full time job and taken care of our home husband,kids,grandkids and a slew of critters,and now find our selves asking for help with ever thing or doing it all(not the job,can't work any more) and then being down for 2days in bed.
Just one last thing,I have not now or then sued anyone, so am not posting this w/any ulterior motive in mind. Only to say I am glad these blogs are out there,and hope that the medical community looks in and opens their eyes.Give the people who need help the help they need. All good information can be a source of help. Thanks for listening. from Plugging Along In The MidWest

Thank you for sharing your story. I hope you'll continue to keep us updated.

R.

CCL50:

It is tough enough when doctors judge people with pain issues harshly. It must hurt when it is you own kids who give you grief. How can you persuade them to be on your side? You give them so much. This is a burden you do not need. A joint therapy session might be in order. Or whup'em upside the head.

Best,
R.

Lingua:

People are never going to get it because we want everything to be okay so we can turn our heads and walk away. We live in a culture that celebrates physical perfection. We do not want to know your troubles. I think you need to disinvest in what others think. You cannot win on that front. Take care f yourself, and the rest will take care of itself.

Best,
R.

Wow! I think you have almost told my story. I have been searching for six months for a doctor to help me. I have been in pain, lost friends ect. while I have been trying to get help with my neck and back. I am treated for serve depression recurring. I have had drs. tell me my pain is in my head, that my warrenty is running out ect.....
I am only 48yrs old. I am going to a dr tomorrow..... my last hope. Thanks for sharing your story.
The one thing I wish these drs. would understand is that I AM TREATED FOR MY DEPRESSION. My pain is something else, not depression.

It is good that you understood that you needed to get a handle on your depression,it is many times directly related to living w/chronic pain.I ended up getting help on 2 fronts.First I found a good councilor who put together a chronic pain group,there were 5 of us, all women of different ages/and diverse backgrounds(added couple of men eventually) anyway after a while w/her help we learned how better to cope not only w/the pain but w/how people treated us
.Believe me it is still very hard,but we have become fast friends,so having a network to call when the world is a heavy weight can be the difference between sitting and crying all day,and being able to get up and have some quality of life for that day.And there are programs to help pay/have reduced payment for the councilor.I ended up only having to pay $5.
Ask around in your area.someone must know of a place who has councilors who care,and then they can become advocates for you. They have the resources to find Dr.'s who care for people like us, who believe in us and take care of us,and treat us like caring people.
I don't know what kind of area you live in,I live in a small town,so it is a little easier getting to know,who's good,but use anybody you know. Ask at the clinic,Hospital etc.believe me the people who work in these places know who to go to.They have the skinny so to speak. DO NOT LET THEM DISMISS YOU.You have to demand to be treated well.And for the most part if you are female,find a female Dr.& Councilor.It makes a difference. I hope this helps you. Keep us posted.

I have said this before. Look for a new doctor. Yours is never going to get it. Get a younger man or woman. You will stand a better chance of being taken seriously. And do not allow your faith in yourself to crack. They-not you- are the problem.

Best,
R.

I love this!! I have Charcot Marie Tooth and Irritable Bowel Syndrome as well as Warped Humor Complex. Yeah, the last one is mine. It's pretty funny because I'm supposed to make it to the bathroom in time but I have trouble because of my CMT. I like the YDU Situation. It's so very true. All of us struggle with things other people don't understand and we get frustrated because even our families don't get it. I will have to remember the YDU situation and remind myself when I'm talking to others that they aren't going to get it either because they are not in my shoes. Literally.