A Pained Life: Missing Support

A Pained Life: Missing Support

I am a member of a number of online support groups. I mostly comment on only one, where I am the administrator, but I like knowing the others are there. I know I’ll find support if and when I write a post or reply to a comment.

bigstock-United-Hands-1589525There is a trigeminal neuralgia support group in Philadelphia. It meets 6 times a year and often there is a speaker. The last time I went the presentation was interesting, but there was no time for support. No opportunity to bond or exchange information, compassion, or the empathy that one usually looks for in a support group.

I used to go more often when it was a “real” support group, where members shared their stories and asked for — and got — help and support.

Margaret was the only person who attended who no longer had pain. She always said at the start of each meeting, “I want people to know you don’t have to have this forever.”

We liked having her in the group. It gave us a different perspective. Maybe the pain will stop or even be cured.

I do not recall Margaret ever telling the story of how her pain stopped, whether it was from medication, surgery or the most rare of recoveries – a spontaneous remission. But that was okay. She did not have the pain anymore. That was enough.

I find in the support groups that it is very rare for someone to comment or attend who no longer has pain. That makes sense. If my pain went away, I would not want to be reminded of it or talk about it. I would to put it in the past and leave it there.

I have not had the worst part of my trigeminal neuralgia — horrendous lightning-like pain striking out of the blue, exploding throughout my mind — for 15 years.

I do not want to remember what it felt like. Talking about that part of the pain is too scary. To be reminded that this is what I used to deal with every day, every hour, and the constant pain, every second.

If I did not continue to have the eye movement and eye usage pain I would not be in any support group. But I still need support and to know I am not alone.  I still need to feel I can be of help, help that comes from the part of me that still struggles with the pain and its consequences.

The problem I see with support groups is that people tend to see what is in front of them, but not what is missing. It is hard to see beyond the pain that each of us brings to the group. Often the succor and understanding we get from them we cannot find elsewhere. They are a wonderful resource.

But we miss a very important component and counterbalance when it is only us.

Once in a while we need to hear that hope, to have the firsthand report:

“I had pain.  And now I don’t.”

Carol Levy

Carol Levy

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.

Carol is the founder of the Facebook support group “Women in Pain Awareness”. Her blog “The Pained Life” can be found here.

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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Authored by: Carol Levy, Columnist

There are 5 comments for this article
  1. Faye RN at 5:20 pm

    Carol, I just love how honest you are about everything. It is a rare treat to hear how you are feeling and thinking without any holding back. It is beautiful. -And appreciated!

    Karen, I am very interested in hearing about your work. Ten years ago, I was nailed by electricity while working in the O.R. I worked for less than a year afterward, and then went thru a very long period of unrelenting pain. After a failed fusion, the pain has continually gotten worse. Tho only real lasting relief I had was with a therapy I had never heard of, and resisted with everything I had. It is called Rolfing, and after ten sessions I was actually able to go back to work! I could not believe how much relief I had. Unfortunately, I had some cognitive issues slow me down, and after a year of working, the pain crept back. The person who helped me moved away, and I’ve tried many other things. Do you think the benefit of myofascial work can happen twice?

    and Julie, I feel your pain. Literally. I had an anterior thoracic fusion in 2006, which wasn’t much more than a ‘well, it’s the only thing we haven’t tried’ kind of thing. Almost no relief came from it, then in 2009, MRI showed the fusion had failed and the bone growth that I had gotten was somehow gone. Last year, I took a fall. Hurrying out the door to go to my brother’s wedding, I slipped off the top of 3 steps, landing flat on my tush on the cement garage floor. I was sitting straight up and it felt like my spine compressed from tailbone to skull. Now I’m trying to decide about a possible surgery to tweak the cages in my back, just like you. This decision seems harder than the first time. I wish you the best, and would love to hear how you do afterward. Good luck!

  2. Karen Kowal, RN, LMT, NCBTMB at 9:10 am

    Over 20 years ago… 3 car accidents within 13 months left me with chronic pain (neck, R jaw, L shoulder, arm & scapula) for over 2 years. Extensive approaches & meds did nothing to relieve or allow me to sleep at night. As a nurse, I became personally aware of all levels of life affected by never-ending pain. Finally, very specific and skilled MFR (MyoFascial Release) & massage finally relieved pain by 95%. I was so amazed I went to Massage School to learn more… and also figure out why this was not recommended to me during the 2+ years I suffered!. That was in 1994. I left nursing and shifted my entire life in a new direction. I have devoted these past years to relieving pain for others on several levels and it has been a blessing. But at 70, the pain of old injuries are again rearing their ugly head, affecting my sleep, ability to do some of the things I love to do. Looking back, I often comment pain took me to a ‘place’ I never imagined and I have been so blessed in so many ways. Today, I will be open to learn from this new chapter of pain and see what happens next! Third doctor seen recommended no surgery due to lots of old adhesions from original injuries. I may have to reduce working.. or find new waysto do things I have been focused on for the past almost 20 years. But I will always be grateful for those years when pain was almost eliminated to allow me to do the work I needed to do! I know what it is like to live in pain… and how easy it would have been to give up. My gratitude is for the brief times I have no pain at all at this point! I am also so grateful for those who have helped me in the past and who continue to help me be ok with slowing down over this past year!

  3. Julie Anna Bloodworth at 7:22 pm

    I am THRILLED to know that there are people that can go back to living a mostly normal life after suffering with unending Chronic Pain – 12 years now for me. Chronic Pain changes EVERYTHING about your life and ALL of your relationships. I am a hard friend to have. Everyone has to come to my house and my pain seems to make it into every conversation – mainly me having to say that I can no longer do restaurants, go shopping, or even go out to hear my Musician Husband play. Then there is the inevitable fidgeting when it is close to “med time” or your pain level has become unbearable and it is quite obvious by my manner and friendliness.
    I am about to have my 3rd Back Surgery December 16th. My 2nd Surgery was VERY helpful and I was beginning to have a little bit of a life. I walked a mile a day, heard my Husband play, we went out to eat – things were much better. Then my Klutzy self slipped on wet grass, did a couple of flips and landed hard on my side/back, knocking the metal cage over onto my S-I Nerve and backing out some of the screws. Sooooo, they are going to take it out if they can (we discussed removal of this cage at some point in the future before the metal was installed), depending on scarring/bone growth . Or they are going to “knock it back into place and tighten up the screws” if it is too complicated to remove.
    I don’t care which it is. I just want to go back to a regular pain level of 5 or less daily with occasional flares of 7-10. To me – that would be a great life and the hope of that helps me bear this agony for 8 more days – until surgery to help – Wow, what if it cured me?

  4. Joy H Selak at 3:37 pm

    For what it is worth to all your readers, I had pain for 20 years and now I don’t. At least not much and not often.

  5. Cozette at 2:30 pm

    Well said Carol, although I am not giving up on HOPE that one day I will be pain FREE! I to agree that the support groups are quite helpful. Just knowing one is not alone in having such chronic pain, is able to share how they are feeling, and having others support verbally well wishes is awesome for me. This support makes bearing the pain a little easier because so many people do not understand and walk away, including family. You are a trooper, supporter and encourager to US in PAIN!