Miss Understood: My Support Group

Miss Understood: My Support Group

(Editor’s Note: National Pain Report welcome Arlene Grau as our newest columnist. Arlene is a young mother who suffers from fibromyalgia, rheumatoid arthritis, lupus and several other diseases. She will be writing about the social aspects of chronic pain, and how pain sufferers and their diseases are often misunderstood.)

Arlene Grau

Arlene Grau

We all have friendships we cherish and treasure. People we know we can count on and trust — no matter what.

But what happens when your friendship or family bonds are put through one of the most difficult tests there is? Why do some relationships survive while others quickly fade away?

This past year I realized who was really there for me unconditionally and who wasn’t. I lost many friendships and relationships, while at the same time I made new connections and strengthened ties with family members and people I considered acquaintances.

It’s unfortunate that there are people in this world who aren’t willing to learn or educate themselves about your pain. Instead they find it easier to simply walk away or ignore what you’re going through. They assume you’re faking it or exaggerating, because you look normal on the outside. They get angry when you turn down an invitation to hang out or go somewhere because of your pain. They don’t understand how you can go from feeling fine one day to being completely disabled the next.

I used to put my body through hell rather than to turn down an invitation to hang out with others because I felt like that was my only option.  I didn’t want my friends or family members to get upset, so I hid my pain and pretended to be “normal” in order to please them.  Sometimes I would go out and end up in the hospital the very next day. All the while, the people who I thought were supposedly my friends or close family members never cared to visit or call me when I had to spend numerous nights alone hospitalized.

I often felt as if no one understood what I was going through,  how my diseases took a toll on my body and state of mind,  and how all I wanted was for someone to take the time to hear me out and stop judging me. Little by little friendships ended, bonds were broken, and my support group grew smaller and smaller.

I went through a state of depression that I wouldn’t wish on my worst enemy. I hated life, felt hopeless, and wanted to give up numerous times.

Thankfully, God graced me with an incredible mother who refused to let me give up and an even more amazing husband who helped me get through my roughest days. I learned that if certain people didn’t care enough to understand what I was dealing with then they really didn’t care about me.

Letting go of the negative and selfish individuals in my life became a healing process. If I was going to fight this pain, then I was going to need the toughest support system I could find.

I’m pleased to say that now I’m not afraid to turn down an invitation. M friends and family all know that nothing is ever definite when it comes to me.  I will RSVP for an event or gathering but everyone knows there’s always a possibility that I won’t make it. I have friends who ask me to explain what my auto-immune diseases are and later Google or research them on their own. My mom has read several books and articles about what I should and shouldn’t be eating. She and my mother in law always take my special diet into consideration when we get together.

My support group has seen many people come and go but now it’s stronger than ever.  Now when I have to spend time in the hospital for pain management and flares, the people in my support group all help out anyway that they can. Often I ask people not to visit me because I’m so heavily medicated that there really is no point. I don’t feel the need to sugar coat what I say to them.

My oldest brother Abraham and kid sister Damaris often fight over who’s going to spend the night with me at the hospital. My parents never listen to me and come anyway, which I value because it makes me feel that much more loved.

For some it may sound like a sad story that I spend most of my time hospitalized or being treated for my constant pain and flares but to me it’s what “normal” is. I always tell others not to pity or feel sorry for me because it does me no good. All I want is to be understood instead of judged.

We all need a strong support system in our lives. Whether you’re ill or not, the people you surround yourself with can make a big impact and help you overcome any obstacle.

The first step in creating yours is weeding out the negative, judgmental individuals who will only bring you down. Find people who are willing to learn about your condition and what your daily struggles are. Then and only then will you feel like someone truly understands you!

Arlene and girlscropped1Arlene Grau lives in Lakewood, California with her family. 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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Nancy Bass

I have had RSD for 13 years. When I 1st got sick with the constant pain that was truly unbearable, I was told that I would have to live with it. It was in my head. The hardest part of this, is the lack of family support. My family has done nothing but, made me feel as though I am wrong. I do not need this medication and the pain I feel can’t be that bad. My own mother had me get rid of my livingroom furniture to take hers. However, due to my 26 year old dayghter and the fact that she will not stop smoking pot and taking her grandmother’s xanax. I was left with NO furniture and am constantly taken as though I am full of crap. It is so hard when your own family will not stand by you. When getting your prescriptions is difficult because you don’t have the money. They left me in the hospital with 2 major blood clots for 17 days. Never did any of them come to visit. I have begged my mother for help for us to move in together, she writes I wish things could be different but, it wont work. Why, because she would rather have a 26 year old that does smoke pot and can stop then her own daughter who needs her help. She feels that my pain cannot be that bad. I am just overreacting. I am at a loss. I want people to know that this is real, it is horrific. It is worse whern daily you go through this alone. No where is there help. I can’t afford my prescriptions, food, rent, and I have a 14 year old son. Who the courts let live with his father over once again, my daughter, who did nothing but lie. I need someone to let our stories be told. Make these people understand that this is not a joke. We don’t want to live like this. We don’t have a choice. NO ONE would choose a life like this. My family has never been there for me. That is I guess because I was adopted my mother must feel as though she was given a defective child. She had 3 sons of her own all very much older then myself. I had a brother that was 18, one that 13 and the closest to my age was 10. My parents were 40 and 52 when I was adopted. But, since I became sick they are wrapped up in the fact that they feel that it is not that bad. I am so tired of having to go through this with a family that is wrapped up in nothing but, themselves. It is wrong for someone to have to endure this alone. Please lets get the word out to people. No one should have to do this alone. No one ever… Thank you

john chivalier

I have RSD types 1@2 in my lower groin and right thigh, both knees have bone spurs torn meniscus and arthritis, my neck has several herniated disc, bone spurs, arthritis and spinal stenosis. As you can see I have a lot going on. I have become a prisoner to these diseases. My girlfriend is no longer around. I have only a few family members that still talk to me. I am at the point where I know no one could ever love someone like me. It is very lonely, in fact I am so lonely if a bill collector or a someone trying to sell me something. I keep them on the line just to talk with someone. This is the life I am left with. My faith has gotten a little stronger, I pray through out the day just to talk(Jesus is the best listener). I ask for no pity or sympathy from anyone. What I would love is for someone to accept and love me for who I am. Thanks for allowing me to share my thoughts.

Kaylee

Many of my friendships have diminished or disappeared over the last few years of worsening pain and new problems popping up all the time. I realized after awhile that some people had no idea what I was struggling with because I went to great lengths to hide or minimize it. I only revealed my pain to people that I really trusted.

Finally I decided to put a post on facebook describing what I suffer from, how it affects me and that I am seeing a new specialist that will hopefully help me better manage my illnesses. I didn’t go in to great detail, especially about treatment because I do use some narcotics and I don’t need that advertised on facebook, but I stated the basics. I’d never posted on facebook about my health problems before. I wasn’t looking for attention or sympathy. Mostly I just wanted friends and family to know that if I couldn’t make it to an event or gathering that it wasn’t that I didn’t want to be there, it’s because sometimes I just can’t, and to please not take it personally.

It went over very well. I had some family members say that it helped them to understand me better. I had a lot of positive and supportive comments.

Lisa Phillips

I have fibromyalgia, TMJ, bilateral carpel tunnel/cubital tunnel (for which I have recently undergone surgery, we’ll see how it goes), severe acid reflux disease, gastritis, esophagitis, duodenitis, migraines, both knees need replaced, osteoarthritis in my knees and lower back, 5 bulging discs, degenerative disc disease, sleep apnea, insomnia, only sleeping at the most inappropriate times, RLS (with no current treatment), involuntary leg movements (sometimes kicking so hard it makes me scream), fatigue, depression, heel spur, bone spurring of my spine and knees, etc…. I have trouble remembering things so I’m sure there’s more! My biggest problem is people not believing fibromyalgia is a REAL disease. People like my husband and all of my children. They are “sick of me being sick all the time or needing help with things”. Really?! I try to get them to understand that I’m probably a thousand times more “SICK of IT”!!!!! My other problem is a really HUGE one!!! My insurance company requires that I get 90 day refills sent in to their mail order pharmacy of any meds I take on a regular basis. Any of you out there know that anytime you use the mail order pharmacies 90% of the time things get messed up and medications do not get to you on time. When I run out of Lyrica it is excruciating. I am having a hard time finding a doctor that will do a 90 day script and can’t even get into my own primary physician to get help with this and my Rheumatologist absolutely refuses. I’m at the end of my rope and need to know if anybody out there knows a good doctor for fibromyalgia in Oklahoma or surrounding states. I’m desperate!!!!!!!!

Melisa

I had an 8mm L5-S1disc herniation. 5 back surgeries (last surgery in 11/07) and several years later….my own Brother told me he was sick of looking at my “pain face” all the time.
Needless to say my brother and I no longer have a relationship.
I’ve lost many, many friends over this physical condition I’m in.
Another example, I spent the weekend with a GF in Palm Springs, in the morning when I got up-I found out she had gone to her yoga class. I packed my stuff and came home. Later I asked why she didn’t invite me-her response was that I “wouldn’t be able to do anything” at the class.
Another issue people with chronic pain are faced with….and that’s other people “thinking” for me and “deciding” for me as to what I am capable of doing-therefore you get EXCLUDED all together-even though you were never asked.
It’s an isolated world for those of us in chronic pain and it’s usually our friends who are doing the “isolating”.

arlene Grau

Thank you Janyce, often times I’ve felt like I’m the only person in the world dealing with all of these issues and emotions. So it’s great to know that we can come together and share our stories. I too pray for my days of remission, however far and few in between they may be. Stay positive, hope for a cure and never give up!

Janyce Sudo

Boy reading your story is like I am reading about my life!!!! I have Sjogren’s Syndrome, Fibromyalgia, Celiac’s Disease,(all auto-immune disorders), a spastic bowel (extremely painful), prone to pseudo-obstructions, osteo-arthritis of the spine, general arthritis through out my whole body! I go through times when I can be in and out of hospital several times over a short period of time. But I do fortunately have times of remission! I pray for those times of remission. I would not wish this pain on my worse enemy!!!!!! So if you know someone who has even only one of these disorders and is in a lot of pain, please support them and do not judge them!

Fellow sufferer
Janyce

Maria Carvalho

I have fibromyalgia and often people dont understand why i am really good one day and in a lot pain the very net day to the point of going to the hodpital.
Thanks