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!
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.
Endometriosis 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.
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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