Chronic Illness & Endometriosis Health

The Hidden Danger of Support Groups: Comparing Your Journey to Others

Over the last few weeks, I have joined a handful of support groups for endometriosis and chronic pain. I am not sure what I was looking for at first, but as time went on it became clear I was seeking validation that I was not crazy and making up my symptoms (as most doctors have told me before). I’ve never been a “support group” person. Honestly, I do not know who would qualify as a “support-group” person, but in my mind this was not me. I tend to deal with most of my problems by myself or through venting to the vast unknown of faceless strangers who usually do not respond if I post the ramblings my vent session has produced.

Nonetheless, I have become an active voyeur on two of these Facebook-based pages and stumbled upon a post the other day that struck a cord in me that felt like I had secretly written it myself using the old “I’m asking for a friend…” story line.  The post was written by a young girl’s mother concerned that her daughter’s endometriosis is not “serious enough” for surgery. She revealed her daughter is scheduled to have a laparoscopy at the Center for Endometriosis Care by Dr. S (where I am trying to get accepted), and it struck a cord because this mother is having the same feelings I am! 

I am second guessing my decision. She doesn’t miss school and hasn’t been to the ER like other teens with Endo…When she does have pain she is hunched over and can’t stand up straight. BUT- she doesn’t miss any school and her pain isn’t so bad that she has to go to ER… I guess I see her on good days and wonder if I am doing the right thing. – Concerned Mom of EndoWarrior

Like me, she was basing her idea of “bad enough” by the stories of the other women in the group. Some of the women have some gruesome histories with this disease and it is very, very easy to look at your own situation and think “I am not as bad as X, why the heck am I complaining?!”  The mom went on to say her daughter does not miss school, does not constantly go to the ER, and does not seem to have constant pain.  This explains exactly how I have felt about my experience with endometriosis for such  a long time! My constant abdominal pain has only been lingering for the last three weeks. I have pain in my legs and arms that has been around for a few years now that I’ve never been able to pin down a cause or source, I have way too frequent migraines (1-2/week), add on constantly nauseous and occasional abdominal pain and it’s a party!endo-chick

When I joined the support groups, looking for help, guidance, and well… support… I was overwhelmed by the depth of suffering that so many women have endured and continue to endure each day. How can I complain that after ten years of moderate, sporadic pain, I’m now having a three week ‘episode’ of severe pain?  For some of these women, my journey with endometriosis would be a cake walk! I do not bleed daily. I am not bedridden. I still work. I am married. I have not been told I cannot have children, although we have also not started *officially* trying yet, either. 
These women ARE warriors! Each day is a battle and they are surviving! How? I am still working to figure that out, as I am struggling on my end, but I will crack the code. These women are beasts who deserve so much respect and adoration. They are impressive. The amount of strength it takes to get out of bed each day… and some are raising children, running companies, taking care of her husband, or even, just taking care of her own sh!% is enough of an accomplishment to be marveled, if you had even a small glimpse of what these women, what we, experience each day.

scared-of-aheadEndometriosis is physically taxing. It is emotionally taxing. It is mentally taxing. The unknown it the worst part. Doctors do not know what causes the pain. Doctors do not know how to stop the pain. Doctors do not know if infertility will occur.

Doctors do not know.

How are we supposed to have it figured out if the doctors don’t?

Oh, yeah, we don’t. We have to listen to the best teacher:

“Be Still and know that I am God” Psalm 46:10-11

It is easier said than done, but He is the only one who has the answer to all of this pain and struggle. We have to trust that there is a reason for this, too. If only to make us appreciate Him more, turn to Him more, or appreciate the time we do have.

be-still

Have you ever second guessed your pain or condition based on someone else’s experience? How did you handle it? Do support groups help or hinder your recovery?


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7 Comment

  1. I guess I never second-guessed my pain because before my first surgery, I knew something wasn’t right and was certain I had endo. Turns out I did! Then I sought a second opinion with Dr. S because I deteriorated very quickly after that first surgery. But every woman is different in how the pain affects their daily lives. Keep in mind also that endo is progressive…you may not be having symptoms as extreme as others now, but not everyone is a stage 4. I’m only a stage 2 and was in pretty bad pain prior to my excision (although it has been shown that the staging system does NOT correlate degree of pain with degree of disease, so it’s kind of useless.) But endo does get worse with time…so it’s possible you just may not be “there” yet.🙁 I mainly stay in the support groups to encourage other women that there is hope with skilled excision by an expert surgeon, because the vast majority of women don’t know that.

    1. Knowing your own body is a very important thing, because we have to speak up for ourselves. Most doctors are not Dr. S. I was reviewing my medical records and saw how much I went through to get my initial diagnosis in 2007. The support groups have allowed me to see that there is hope and that I simply need to educate myself more. It is amazing how little is known!

  2. Every person who experiences pain will experience it differently. Some people can handle very strong levels of pain, while others may have trouble with a simple headache. But that doesn’t have anything to do with how strong or weak you are as a person. Maybe the best thing about support groups is learning different ways of managing the pain and knowing that you’re not alone. Plus, helping others feels good and can be a type of therapy.

    The problem with ignoring acute pain, even if it’s not constant, is that it has the potential to become chronic. Those who ignore their pain will have to pay the piper eventually.

    Maybe the best advice I can give you is to get to know your pain. What exacerbates it; what helps manage it. Pain is like another whole person living inside of you. And this person is very, very angry. Get to know that person called pain. Intimately. The more you know, the better you’ll be able to fight it.

    Unfortunately, I can’t tell you how to fight your own war against pain. But just know that if you ever have questions, you know where to find me. 🙂

    1. Thank you so much! I am relearning this pain journey and finally taking it seriously. I appreciate any and all advice I am receiving and doing my best not to get bogged down in the comparison game 🙂 I appreciate your advice – it is helpful!

  3. Great post, while I don’t have endometriosis (that I know of)…still have unexplained pain and kept tacking on the diagnosis, I, like you, have second guessed if I’m really bad enough for surgery. I had surgery for a rare syndrome called Nutcracker Syndrome and I joined a support group because it was the only way to really educate myself. I also at the time felt like I wasn’t a person who was meant for support groups, I’m very introverted, and just…I don’t know. However, in time I found that it was helpful. But many of these women (and a few men) I met had been suffering for 10-15 years while I had been diagnosed in about two years and getting ready to have surgery. Some of them weren’t working and here I was still working. At times, I questioned…well should I wait, but I know that every person and every situation is different. Going through with surgery wasn’t the wrong decision for me just because some of my situation was different for me. I find that you can never compare your experience with anyone elses because even symptoms can be different. While some of those women I met in my support group still haven’t found relief and my pain is unfortunately still present after surgery (however it fixed some of my symptoms and prevented damage to my kidney), but I live near the Cleveland Clinic and am fortunate to have access to some of the best medical care in the world. While I wish I could help the other people in my group more, and I try to as best as I can, I can’t punish myself for having access to that care or by waiting around to get worse. At the same time jumping to a decision such as surgery, is also not right either, it must be thought through, but never should you punish yourself or compare yourself with other people’s situations. I work as a nurse and one time I had pain at work and a nurse aide said to me “at least you don’t have diverticulitis” I said to her….”you don’t know my pain, and I don’t know yours” No one should ever compare their pains, because even if I did happen to have both nutcracker syndrome and diverticulititis, it wouldn’t matter because not everyone’s diverticulitis is the same. Which is why in support groups I take everything with a grain of salt. It’s a great community to be apart of, get some feedback and find helpful resources and provide support when no one else understands situations, but as far as symptoms go I take it with a grain of salt, because everyone is different. (sorry this is so long haha)! Wish you well!

    1. Love your comment! It is true – no two experiences are exactly the same. Although I have found comfort in the similarity of some shared experiences others have had, allowing me to know I am not going crazy being the only one ignored or pushed aside by doctors. It is the worst to try to compare one person’s pain to another. I had that conversation with a friend the other day who complained of a headache and then apologized for complaining because “you have worse pain every day”. I had to explain that she was allowed to tell me she had a pain, and that her pain was bad because a “5” to me, may be a “10” to her… no one experiences the same situation in exactly the same way. Thank you so much for reading 🙂

      1. Yea, definitely good in finding comfort knowing your not crazy because yea some doctors definitely make us feel that way. I remember a time being in the ER after being diagnosed and a doctor told me I was a moron and said I had a pulled muscle. I was literally shaking my head thinking…I’m the moron? And other days I’ve been so frustrated thinking that the pain isn’t really real and that I’m just fabricating symptoms when really I’m not. So yea definitely the comfort of support groups, and having people go through similar things is definitely beneficial.

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