Miss Understood: Looking for Change

Miss Understood: Looking for Change

The other day I was having a conversation with a friend and she wanted to know how I was doing. I paused before I answered and considered giving her my honest response, but decided to keep it simple. I said I was fine.

Arlene Grau

Arlene Grau

She knew I was lying because my face told a different story.

When someone asks me how I’m doing, I get nervous when I have to answer. If I tell them how I truly feel, they might think I’m whining or complaining. Some people even think I exaggerate the amount of pain I’m in or that I’m looking for pity. I was even called a hypochondriac once because I had been in and out of the hospital every other week.

So, I give one or two word responses like “I’m okay” or “I’m fine” because I don’t want to be judged.

It’s so hard to find genuine, honest, caring people who can sympathize with what I’m going through.

It’s easy for someone to say “I’m praying for you” or “I’m here if you need me”, but when the time comes and I call on those individuals they never have the time to listen. They would rather sweep it under the rug and forget it’s there.

In my journey with speaking out about my conditions and the way they affect me, I’ve learned that most people like me want one thing: to be heard. To have the ability to tell their story and feel like someone is actually paying attention to what they’re saying.

I find that many people turn a blind eye to those who suffer. I don’t hear many people asking “How are you doing?” anymore. I don’t get many calls, emails or text messages from the people I once knew.

Since being medically terminated from my job, I’ve only heard from two or three people I used to work with. I dedicated ten years to my previous employer, met dozens of people and became very close to many of them. But since my condition has worsened this past year, only a handful have continued to be a part of my life.

I could say that it doesn’t bother me or that I don’t need anyone, but I would be lying to myself. It’s not attention I’m seeking.

I find that hearing other people talk about what’s going on in their lives allows me to escape my reality and feel normal. Finding a good support group is not easy for chronic pain sufferers because we’re viewed differently. People would rather avoid us entirely because they think our struggles bring negativity, but this is our life.

I would give anything to return to work and be an active mother who can play all day with her children without needing breaks or aching.

I can’t change the fact that I’m chronically ill, but others can change the way they treat people like me. I don’t expect anyone to fix me and I know sometimes it seems like there’s too much going on. But if an outsider who isn’t living with pain can’t handle hearing about it, just imagine what it’s like living through it on a daily basis.

Arlene Grau lives in Lakewood, California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

There are 11 comments for this article
  1. arlene Grau at 11:35 pm

    There is hope for the hopeless. One way or another we will overcome and win this battle. Stay positive and remember, there is strength in numbers.

  2. Trudy McGee at 7:07 am

    What gets to me is all the so called “caring” people who send you emails with articles on them about how you can cure yourself. Then, if you don’t try it, buy it, or it does’t work, then you are not trying hard enough, and must enjoy being in pain, or you are lying, OR you are just looking for a legal” high with the drugs. My own brother told me that I must not be in pain, because his pain was CURED by a several thousand dollar magnetic pad. (that he bought from his hairdresser, BTW) Funny, I just read a study that magnets do nothing. This is a societal problem, esp. since the witch hunt for pain patients has gotten way! The entrepreneurs see dollar signs to sell to those who are desperate, and we are not trying if we don’t go broke trying. Then, you lose the family/friends who were only trying to help you. Who needs this aggravation anyhow. And researchers wonder why people in chronic pain become isolated?? Perhaps a good portion is the researchers fault!

  3. margo caldwell at 8:43 am

    hi,my beautiful people….boy do we know all about the “but u don’t look sick” syndrome of “those” people,from in-laws to fairweather friends. and co-workers.back when i was working 3 part-time jobs(barely) and they asked how are you? just to be polite, my answer was comme-ci,comme-ca,which means so-so. most people had no idea what that meant, but were too embarrassed to ask again. so i had my own lil inside joke going on….laughter is the best medicine,right folks? and sometimes u just gotta laugh,cuz if u don’t, you’ll cry?..we’ve all been there. that is what is wonderful about this site,cuz we do understand each other and can/will give that moral support to deflate the negativity that the world permeates us with. together we are one voice,much louder than only ourselves can be alone. these new laws about pain meds/treatments are so unfair they should be illegal!!! we are supposed to move forward with medical care, not step back into the dark ages. on but wait,centuries ago,laudenaum was legal for anyone for the asking. as was morphine..sold in sears catalogs,without even consulting a doctor. a trip to the local apothecary in Europe pre USA was all it took. no doc necessary…no govt regulations…now the govt seems to want to let us all die off for population control,and they save money that way too! well,enough negativity-i really just wanted to share that i have been disabled since childhood,but always tried to tough it out,cuz that was what was expected….don’t be lazy…u must be crazy…to the point i probably damaged myself more by overdoing when i shoulda been slowing down and asking for help. but we are allowed to believe we are superhuman try try again,never give up..and we want to please, so we keep going and going like the energizer bunny till we can finally go no more…til we have beaten our bodies til they are practically useless, then people may ask, what happened…what have u done to yourself…when did this happen??? why didn’t u speak up sooner…you need to see a dr. you need to tell ur doctor…blah,blah,blah.well we finally at some point do go and tell a dr. and they make us fill out 20 some pages about our mental status b4 physically examing us and pre-decide..well if it were bad as you say,you would be in a wheel chair…can u bathe and dress yourself…did you come here alone? like we want to admit to anyone, the least of a stranger..well…i need to change clothes several times a day cuz i can’t make it to the bathroom by myself cuz i am so much pain i have to roll out of bed to the floor and shimmy on my knees and i never wear button up tops and i only wear pullup pants and slip on shoes cuz i cannot tie my own laces. if people saw our day to day struggles they would be way less likely to sit and cry about themselves cuz they broke a nail or got a paper cut…we really hurt….we rarely get relief, no one believes us,or are never available to help…and because some people abuse the system ( and usually get away with it) we HAVE TO SUFFER cuz we have no choice in the matter. and for the ones with bad doctors,if we keep changing drs. looking for the right one…then we are labeled dr. shoppers or drug seekers…damned if we do and damned if we don’t….but together,in numbers, maybe we can get “the powers that be” to listen and do something to make it right.wouldn’t it be better to risk a few wrong people slip through than to make the many right people suffer????? of course…so keep posting people,get your stories out there, alone, no single disabled person is capable of convincing anyone of anything. but when the numbers speak together,the words become convincing…..one step at a time…we shall overcome!!!!!

  4. Donna Shoemaker at 1:36 am

    Thank you. I can almost hear myself. I haven’t stopped working. But it is a challenge. Life got real :/

  5. Margaret Pelc at 7:43 pm

    This is a very well written testament to what it is like trying to live with chronic pain. I have Fibro and Osteoarthritis. Most days it is a challenge just to take care of myself, let alone doing a job and have some social life too. I am trying to go it without pain medications, but this battle is fading and I am finding myself having to seek relief more often. I makes me sad and frustrated when this happens. As for sharing my conditions with others, I have not even shared this with my sisters and brothers. They would just think that I am a sissy and that I am just lazy. I assure you though, I am not. I am quite active, but as each day passes, I wonder how much longer I can remain that way. Hang in there. Thanks for sharing your perspective. I hope you find the support and the relief that you are looking for…..God bless.

  6. juanita gonzales at 6:09 pm

    ms Arlene my prayers going your way and I can say I know what you’re going thru. When people see me they dont see the pain or hurt all they see is a healthy looking woman. They dont see the pain,aches,hurt, etc… and they really dont want to hear about how you are hurting or aching. I have ra and vascultis. so I;m here if you need to talk if you need a shoulder to cry on my shoulder is available .there are so many people out there with unseen illness and people judge them. blessing to you

  7. Patti at 1:44 pm

    I so relate, agree & empathize with you!
    I have central pain syndrome, CPS.
    Very few people want to hear how we’re honestly feeling, so depending on the individual, my usual response is similar to yours, or “just hanging in there.”
    Since chronic pain is generally invisible, no one can comprehend what it’s like to live w/ constant & / or incurable pain.

  8. Joy H Selak at 1:15 pm

    I agree with what you write, but I also felt the same when I went through a divorce. If people haven’t had your experience, they are often not very good at offering sympathy or support. I also had the feeling they were afraid they might ‘catch my disease’ if they acknowledged it was real. It seemed the thinking went like this: ‘If this can happen to her, it might happen to me, so I’m going to consider it her fault, therefore it can’t happen to me.’

    I think the thing that drives this can be attributed more to a fear of illness, than not caring about the individual. Now, I try to be clear and unemotional, and not belabor the point, but go ahead and tell what’s going on. It’s OK to say, today is not a really good day. I’m going to need to lay down soon, or whatever.

  9. Lisa Moore at 12:30 pm

    I agree – I’m in similar situation and was denied treatment because I had recently been treated for kidney stones that were stuck and a UTI that was resistant to Cipro/Keflex. I had been treated for 3 months and finally went to Urologist for help because it wasn’t clearing up. Then, I slipped and fell off my deck and ER dr. refused to treat me, although I was severely hurt – ribs and spine. This thing with the DEA and pain is out of hand.

  10. Cecelia Burden- Gonzales at 12:17 pm

    Hey! My names Cecelia. I read you article and was so touched. It hit so close to home with me because I’ve suffered with fibromyalgia for the last 11 years. It’s hard to find people who understand what I go through on a daily bases. Even harder is finding people who care enough to even try to understand. What makes my situation harder is that my body adapts very quickly to medicine. So even if I find something that starts helping me it only last for about 4 to 6 months. Finally I got tired of putting so many different chemicals in my body and just stopped. I deal with my fibro without any drugs. I understand how painful hard simple day to day activities can be and how judgmental people are.

  11. Anna Laver at 11:07 am

    Arlene you’ve hit the nail on the head mam. I have arthritis, scoliosis, osteoporosis and IBS. I cannot walk far and have to use a scooter to get around. I know people who virtually ignore what’s wrong with me and are only too happy to offload their problems on me, but the minute I need to talk they switch off. Life is so unfair.