Miss Understood: Fibromyalgia and Loss of Physical Contact

Miss Understood: Fibromyalgia and Loss of Physical Contact

Growing up I was always a very affectionate person. I often relied on a good old fashioned hug when I was feeling down and out. Or a simple squeeze of my hand to reassure me that everything was going to be okay.

But as many people who suffer from fibromyalgia know, the widespread pain caused by the disease makes being touched unbearable at times and simply impossible.

Arlene Grau

Arlene Grau

These days I not only isolate myself from most contact with others, but my closest family and friends seem to be afraid of touching me in any way shape or form for fear of hurting me as well.

I know most people mean well and are looking out for my best interest when they try to keep me at arms length for fear of hurting me. But that doesn’t mean it doesn’t sting a little to feel like I’m being handle with kid gloves, even by my own husband. Sometimes he will give me a hug, but it’s almost like he’s barely got his arms around me. He’s afraid he’s going to squeeze me too tight and I’ll end up hurting for the rest of the day.

I know it’s done with love and good intentions, but I want to feel normal and have him hug and lift me up like they do in the movies. But that’s not my life.

My life is giving people permission to hug or even shake my hand. It’s like extending an olive branch — letting others know if and when it’s okay to have any kind of contact with me and how much is too much.

I know my limits and excuse myself from certain situations. Like when I meet men, I don’t shake their hands because they tend to be too firm. Once, I shook someone’s hand and I had to wear a brace for 2 weeks because of it.

I just never know what someone who doesn’t know me might do. I might seem rude or stuck up because I don’t like to explain why I won’t shake hands. So I politely decline.

I feel as though the only people who need to know the reason why I have to keep my distance are those closest to me, because they’re the ones who have taken the time to truly understand my situation.

When I tell strangers I have fibromyalgia they usually have a blank look on their face and answer with “Oh.” Then if I ask them if they know what it is they always say no. Most people would rather stay in the dark than to be informed. I have no problem explaining it, but it becomes frustrating when you try to educate others about something so close to home and they could care less.

I’m all about advocacy, but unless it directly affects someone they don’t seem to care or want to give you the time of day.

Fibromyalgia is more common than people think and the pain it causes can’t be described in words. It makes you weak, tired, irritable, and causes widespread pain that remains constant. Your physical contact with others diminishes and your ability to have a normal life goes out the door.

Arlene and girlscropped1Arlene Grau lives in southern 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 tr toeatment. 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 7 comments for this article
  1. Nicky at 12:45 pm

    I refuse to shake hands, I say sorry I have a cold, stops them dead. I think it is also too masculine to shake a lady’s hand, 2nd solution, wear a splint or support bandage to indicate pain, or say oh sorry I just had my nails done!

  2. Tammy at 10:52 am

    I really understand where you all are at. I have severe fibromyagia, osteoarthritis, tarlov cysts that grow , and yes they cause pain. Also as you know all the other stuff that comes with fibro. I was finally diagnosed in my 30s and am now 54. I have been told it was all in my head then once offered a bullet from a neurologist, because he said that was my only help. Now I have a great doctor but still suffer pain day in and day out. I had to have my lower spine fused. And my cervical. The cervical went great. The spine what a joke. I had a pain pump put in about 2 years ago but it won’t form scar tissue around it so it moves. So all I do is wait my turn for God to take me home and try to help other people while I am still here. May God Bless each and every one of you.

  3. Arlene Grau at 10:57 pm

    Lana,
    I can relate to how you’re feeling, but death shouldn’t be something you look forward to. You should find a happy medium, even though I know everyday pain makes that nearly impossible. Relief is out there. Even if it’s only momentary or in pill form. I’ve tried acupressure, acupuncture, religion, holistic medicine, etc. Don’t give up!

    All the best,
    Arlene

  4. BL at 5:55 pm

    Lana mullino, if you enjoy books, call your local public library and ask if they have books on audio. They may be able to send you the recorder as well as the tapes.

  5. Lana mullino at 5:40 pm

    I too suffer with fibromyalgia and rheumatoid arthritis and was just reflecting back to a time when I asked my friends if it made their knuckles hurt to knock on doors as it did mine. They all responded with “no” and that became one of my early indicators that something was wrong. That was over 30 years ago and I am basically a shut in now. I go out maybe once every 3-4 weeks and that is only on a good day. I find that television is a lifesaver as a good show that occupies my mind can take the edge off the pain which brings me to tears quite often. It is impossible to read a book because of the pain i feel in my wrists and fingers due to the weight of the book. I used to be a trauma nurse and my old nursing friends do not understand my suffering and if it wasn’t for Facebook I would not be in contact with them at all. I only pray for the relief that death will bring.

  6. jim P at 12:01 pm

    Im so sorry for your pain, i just met a beautifil eoman with same as you! My heart goes out to u n all others!

  7. BL at 10:18 am

    Arlene, you summed up well the reason why others, including medical professionals have no clue what it it like to live with chronic severe pain that is undertreated or untreated.”I’m all about advocacy, but unless it directly affects someone they don’t seem to care or want to give you the time of day.”