Miss Understood: The Unfiltered Truth

Miss Understood: The Unfiltered Truth

My chronic pain has led me down the road of heart ache, suffering, depression and hopelessness. Every day is a struggle and finding a reason to keep fighting doesn’t always come easy.

Arlene Grau

Arlene Grau

Every night I go to bed wondering what the next day will bring. I feel like a failure because I’m unable to work or contribute and the responsibility has fallen solely on my husband. It hurts me to see him working so hard to support our family, I know he loves us but I feel as though he’s being punished because me.

Pain can break down even the strongest person and it takes you into the darkest areas of your mind. It feeds on your depression and is fueled by your desire to give up.

Most people’s initial reaction when I express my frustration or tell them I can’t go on this way is that I’m somewhat suicidal. They judge me instead of hearing me out or being supportive.

I think everyone, both healthy and sick, has wished for a better life at one point in time. So why is it that when I do the same, I’m categorized and scrutinized?

Who wouldn’t want to live a pain-free life?

Yes, I hate my situation at times. I get angry and want to scream when I can’t do something as simple as getting out of bed. But, I love my life. I love who I am in spite of my health conditions. I feel as though I’ve been given a purpose and if I can help just one person with something I’ve learned, then I’ve made a difference.

I don’t always talk about what I’m going through because I know it may scare people away. So when I do decide to share a glimpse of that world, I don’t expect others to have all the right answers. I’m just looking for an outlet.

I can’t always control how I feel. I’m going to have good days and bad days. I may cry, pour my heart out or vent until I’m blue in the face. I’m not asking for someone to fix my problems or make them all go away. I’m asking for understanding and a nonjudgmental forum to express myself.

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.

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Anita Spero

O MY! I have Lupus and almost all that you have. Plus the left over effects from severe abuse as a child…Broken bones hat did not heal right etc;
I was just torn off my medication. No answers and a very mean Doctor.
I am lost once again.
It took me 4 years, 17 to 19 hours a day to build up my business. With the medication I ALMOST made it to the top. Magazines, interviews etc;.
In one day that was all taken from me.
The doctors answer “Deal with it”.
I’m scarred ,getting very sick and trying to start all over again.
Thank you for everything you are doing..

Janice Reynolds

You are not along. Unfortunately persistent pain is so misunderstood not only by many providers but by the general public as well. I am fortunate to have a husband and daughter who are incredibly supportive (sons don’t quite get it) but I know I am an exception. Please consider joining us at The Pain Community for information and support: http://www.paincommunity.org.

arlene Grau

Thank you all for the support and for sharing your stories as well. I felt I needed to be brutally honest about how I sometimes feel and have felt. I take it one second at a time and I have a LOT to live for, but there are times when I wish things were better. Giving up is the easiest thing to do, I have decided to fight.

Arlene Grau

Judy Broscious

I have RSD , a periphial nueropathy, bars and screws in my back with the bones being inflamed below and above the bars & arthritis. It has been almost 10 years that I have suffered with these conditions. I have attended a pain support group which helps with ideas on how to cope and has speakers with good information. I suffer with anxiety and depression every day.

I make sure I get up and dressed everyday and I’ve learned some coping techniques . It has created a great financial hardship for me. I try to work at a small paying part-time job to keep myself busy and to get out of the house and socialize a little.

The things most people do on a daily basis are hard for me to accomplish but I slowly get them done. It just takes me a lot more time to do them. There are days that I think why even go on. What’s the use. I just want to be pain free .
Why look for a boyfriend no one wants to have to cope with a poor sick person. I have many times thought about just sitting in the garage with the car on and doing away with myself. When I say this to family members they tell me how guilty they would feel if I did this. They would think they could have done something more for me . This is why I don’t do something like that. But it very hard at times to deal with such pain.

I know exactly what you are feeling. Hang in there. We have to live day to day. Some days are good and some days are bad. But with peoples understanding it helps.

With the exception of migraine, I too have all of the above! In addition to Lyme & systemic sclerosis*; oh but it is ONLY 1:40 ana nucleolar pattern, which is what my docs have said to me. It is like telling a cancer patient, “OH, your breast/brain/penis cancer, it is only 1 millimeter!
*my belief is the SS is caused from having had 10 MRIs with contrast; no treatment, no cure! So be sure in any of your health workups, you DO NOT GET ANY MRI CONTRAST! If you HAVE HAD SOME, get labs done through Mayo Medical Labs, urine and serum/blood Gadolinium, if it IS found in labs get dermal biopsies done, if then found in high amounts,sue their butts! NIEO (Nothing In Everything Out!) meaning stick nothing INTO the body in pursuit of a diagnosis, take everything OUT of the body THEN tst it! I learned MY LESSON!
SO I KNOW what you are going through EXACTLY. Can’t say t will EVER get better but we can TRY!

John Quintner

@ Arlene. The answer the question you pose (“I think everyone, both healthy and sick, has wished for a better life at one point in time. So why is it that when I do the same, I’m categorized and scrutinized?”) is so difficult to frame because it takes us to the essence of what it is to be human.

In my opinion, in the search for definitive medical diagnoses we have lost sight of those states of being that concern basic human conditions. We have inherited systems of stress response that when unleashed manifest themselves by a variety of “medically unexplained” symptoms and conditions, to which we have attached a host of different but overlapping labels.

Your struggle to exist may turn out to be explainable by a change in the regulation of such systems so as they (i.e. stress response genes) can no longer switch themselves off when not needed.

This hypothesis (= educated guess) would change the way you and others look upon your condition. What we currently lack is a specific and measurable biological marker of activation of stress response systems. Substance P appears to be such a candidate but measuring its levels in spinal fluid is too invasive a procedure.

Does this make sense to you? We published this hypothesis in 2011.

Reference: Lyon P, Cohen ML, Quintner JL. An evolutionary stress-response hypothesis for chronic widespread pain (Fibromyalgia Syndrome). Pain Medicine 2011; 12: 1167-1178.

Nancy

I so understand how you feel because I feel the same way. Because most of the time I don’t look sick because I don’t leave my house when I am having a bad day or a bad week. I just stay in bed and try to survive. So when I do on occasion go to the grocery store I put on a little lipstick, take a shower and put clean clothes on. I am so tired of people saying to me wow you don’t look sick at all, you look great. I feel like I have to explain to them or I should carry a picture around of how I look 80% of the time. Do they know just for me to go to the grocery store is a huge deal and takes me hours to get ready and many times I have to cancel because the nerves in my legs are on fire and just getting ready already sucked up all my energy for the day. My gosh do they think I want to live like this in was at the height of my career I had just received a 15k raise. It was finally my time I was 52 still looked good, worked out, had a great life and it was all gone after one little surgery. I had also bought into a dream a family business, life could not of been better. Now I am nobody, no one that I worked with for over 25 years ever even stops by and I can see the hospital I worked for from my back deck. I bought this place so I could walk to work. It was perfect. Now it is nights of insurmountable nerve pain that I scream out loud as my little dogs look at me knowing I am in pain but not knowing what to do. I often think of death and the peace it would bring but I have kids I love, grandkids I adore and those two little chihuahua’s who love me so much. What would happen to them? They have been with me during this journey, licked my tears, licked my legs as they know my legs are bad. Laying on my chest staring at me as to say don’t leave us mommy you are all we got. So I find groups of other people who are walking the same journey as me because they understand. If it were not for my support groups I am not sure I could of survived the last six years. They have cheered me on, they have listened and said we understand, they have prayed for me and cried for me and celebrated when I won my SDI so I could have insurance again. So you are not alone, their are millions of us suffering with CP. We have each other and together maybe we can make it easier for the next generation of people dealing with CP. I am glad you shared your story it was… Read more »

Excellent post…and yes, I hear you, can comisserate with you, and can empathize. Gentle hugs!

Your column was so touching and heartbreaking at the same time. I feel your pain through your words.

Please, please check out my Facebook page, or website. There is so much available to help you, even though it seems impossible to heal with your list of issues.

Facebook.com/RelieveFibromyalgiaPain
RelieveFibromyalgiaPain.com

Gentle Hugs, with love and light,
Karen