I am struggling with the isolation of this disease. Its been years of less and less engagement with my friends and family due to the pain, but also of me pulling away more and more as I get disappointed in the lack of compassion or consideration from the people who “love me”.
A little history: 37 years old. I have stage 4 endometriosis with frozen pelvis syndrome adhering my uterus, bladder, bowel, and ovaries. They have found endo on my SI joint, and also diagnosed with diaphragmatic endometriosis on my diaphragm and chest wall. It took almost 13 years to be diagnosed properly due to excessive c-section scarring being the easy blame by every doctor I saw. I had tubal litigation after my 3rd c-section. Due to chronic pelvic inflammation, my felshie clips migrated into my pelvis and large adhesions formed around them. They did a surgery in 2022 to remove these in which they found endo…well, everywhere. They saw my bladder was stuck to my uterus at this time. I had multiple cysts that were removed at this time, as well as an umbilical hernia was repaired. In 2024, I had another surgery to remove another clip they didnt find the first time (there are 4 total, 1 still missing in me) and they also performed ablation of my endo along my uterus, ovaries, and rectum. Since then, my pain has increased massively. It feels like I am being torn apart when I bend or turn over in bed, I can’t have sex without sharp, stabbing pain, and now using the bathroom (1 or 2) are very painful and irregular. Recent imaging shows full “frozen” pelvis in most pelvic organs. My OBGYN that I have had since 2022 really cares, but is not very knowledgeable. She referred me out for excision surgery and a hysterectomy since I have 3 kids and can’t support more with my current reproductive dysfunction. On top of all this, I have Graves disease (thyroid hyperactive autoimmune disease), rheumatoid arthritis (joint & inflammatory autoimmune disease), as well as malabsorption issue with lacate dehydrogenase and B6 which has resulted in excessive weight loss (40lbs in 3 months). With all this, needless to say, I am in a lot of pain, constantly exhausted, and struggling to function.
I am married (18 years) with 3 children (18, 16, 9). I am the primary breadwinner, working two jobs (marketing director for tech company, program director for educational branch of sister company) and I handle all the finances, schedules, emotional regulation, and “needs” of my family. I don’t do much housework besides laundry, but I cook 4 days a week.
The thing is…no one else does much of anything. No one wants to clean, no one cares to cook other nights, I dont get help with any problem-solving, financial assistance (Which despite good jobs, I am severely underpaid and overworked. I believe due to my age and lack of a college education. I got where I am from working my way up in experience over 15 years).
I don’t have the energy to find a better paid, less stressful job (I work 55 hours a week minimum and am running about 6 positions solo). I don’t have energy to fight for a cleaner home, despite having severe anxiety in disorganized spaces. I don’t have the energy to explain why I could function yesterday, but not today.
Even if they couldn’t “DO” more to help me, if they were more understanding of why I cant do certain things or why I need them to treat me gently, it would help so much. However, no one in my family is very empathic. They are all very smart, cold, and logical people, while I am more aware of people, my surroundings, and emotionally in-tune. I tried so much to communicate for years, and got no where…so I just feel like I have given up on my family’s ability to really see me and the help I need. I get told “I am playing the victim and gaslighting them. I just want them to feel guilty…” (My 18 year old son and husband mostly) My daughters are a little better, but one is too young to really understand, and the other is a busy, magnet school student who I believe is ignoring my illness to preserve her own ability to function. They don’t help, but they don’t hurt either. The boys are pretty hurtful.
No one asks how I am doing except when they want to really know “are you well enough to be useful to me”
“How are you feeling? Want to order food?”
“How are you feeling? Can you help me put something together?”
“How are you feeling? Can I shoot something passed you and get your advice?”
They want permission to ask for more, not to really see if I am okay…it is so very, very lonely. I wish I had a friend nearby or someone who understood the magnitude of the suffering I am experiencing while still trying to live life. I wish I felt relevant and valuable, even when I am useless. Ugh.
This has been such a long rant, and I don’t know if these forums are even checked often…but I guess it does feel a little better to get it out at least. I know my family loves me, let me finish with that. I just don’t know if their love is the kind I need. Does that make me selfish?