This has been one hell of a week. No, make that, month.
For many reasons, one being comparing my health to others’, it has been hard for me to say, I have a chronic illness.
Actually, I have several.
I was diagnosed with hypothyroidism at 16, PCOS at 20, gastritis at 31, and endometriosis at 31.
For the most part, they aren’t debilitating. A friend of mine says she has a daughter and works more hours than I do and I’m more exhausted than she is. I know she doesn’t mean anything by it, it’s just a general observation, but my brain twists it into, Maybe I’m just lazy, maybe it’s not that I am tired.
The past couple of weeks – really, the past several months – have disproved that, but I don’t think I truly realized it until my OB-GYN did bloodwork to test my thyroid hormones and he saw how off everything was. I thought maybe I was just lazy or maybe being sedentary was the problem, but I had no energy and was more depressed because I had no energy.
Even though I’ve dealt with chronic exhaustion since my teens due to all of the above, specifically the hypothyroidism, the biggest battle with my health has been my digestive system. I have had IBS pretty much since birth. At one point, in infancy, I was so constipated the doctor thought I might have Hirschsprung’s Disease where you’re missing nerve cells along the end of the bowel and the bowels can’t move like they should. (But then when the doctor tried to physically examine my rectum, I pooped all over him, haha.)
I spent, oh, probably about the first 30 years of my life chronically constipated, no matter what I did. Then around the time I was diagnosed with gastritis and endometriosis, the tables flipped and I have found myself running to the bathroom more times that I care to admit.
Endometriosis seems to be running the show with my body here lately. I really wish more was known about the disease and it wasn’t just as advertised as “heavy periods with pain and pain during sex,” narrowing it down to a wholly female reproductive system issue.
Endometriosis really is a whole body disease. Sure, I have horrible cramps, pain during sex, and sometimes heavy periods, though not as heavy as they were before going on birth control nearly 8 years ago. However, my digestive issues are worsened by it, I have headaches that seem to be getting more painful every month, my whole abdomen becomes inflamed and tender, and if I have any pain in my gut, it triggers the endometriosis in my pelvic area to flare up and I ache from my upper abdomen to my knees. I think it exacerbates my gastritis and IBS because they’re worse close to and during my period, and like I said above, I am so fucking tired all the time.
It is extremely difficult not to be frustrated with my body. I feel like everything I eat is wrong because it goes right through me, makes my upper abdomen ache, gives me reflux, or all of the above. I am often afraid to go anywhere because I’m worried I will have to go to the bathroom and won’t be near one. John gets so annoyed when he wants to go somewhere and I’m like, “Give me another 30 minutes to see if I need to go to the bathroom before we leave.” This has kept us from going on walks or going hiking several times. And sometimes, the stomach cramps are so bad when I have to go that I have nearly passed out in the middle of the grocery store. And guess what, when my stomach cramps like that, the endometriosis around my uterus and ovaries is like, hey, we want to join the cramps party too and I am so wiped out by it all that I have to lie down.
I have been thinking about this a lot over the past few weeks and realized I have spent most of my life angry and disappointed with my body because of my struggles to lose weight and keep it off (more so than most people since I have such hormone imbalances between my thyroid and sex hormones), my at-times crippling anxiety and always overthinking brain, not having a very conventionally “feminine” body shape, and my chronic GI issues.
I look at myself in the mirror and I don’t look like anything is physically wrong with me. I can walk, talk, eat, drink, breathe, swim, move, think, speak, smell, hear just fine. I think I often feel a lot of shame for this too because I think about the real privileges I have and how often I overlook them.
It is hard for me to rest because I still equate resting with laziness thanks to my dad who used “lazy” like a dirty word when my brothers and I just wanted to spend our Saturdays watching TV and lying on the couch. I feel like a useless dead weight and burden if I am not doing something active. Being unemployed twice for more than a month over the past 2 years really drove these feelings home, and it stung more when John said staying on the couch in my pajamas all day while looking for jobs online made me less attractive to him because “it looked like I had given up on myself.”
Self care feels really difficult when you feel so angry, resentful, and disappointed with your body, but this is where self-care is more than just bubble baths or ice cream or reading a good book.
Self-care, especially when you have chronic health issues, means being empathetic towards yourself.
This does not come easy for me because self-compassion is still such a struggle for me. So I think, How do I react when others tell me their bodies hurt or don’t work like they want them to?
Take my mom, for example, who struggles with debilitating, chronic neck and back pain and neuropathy in her hips, lower back, and legs. When she tells me she has days where all she can do is sob and her pain medication has run out or it’s not even touching the pain, I say, “Oh Mama, I’m so sorry you’re hurting.” Then I listen to her express her frustrations with her body, doctors, the way the government is handling the opioid “crisis” and bunching those with legitimate pain issues like my mom in with people who abuse pain medication, and etc. I don’t know exactly how she feels and I can’t do anything to take the pain away, but I listen and I ask how I can help in other ways, like cooking, washing the dishes, taking her dogs outside to potty, getting her something to drink, taking out the trash, etc.
How do I treat myself when my stomach is upset, I’m cramping horribly, my head hurts, or I’m so tired I can’t function? My stupid stomach ruins everything for me. I can’t go anywhere. I can’t eat anything. I can’t even drink a freaking margarita. My body hates me so much. Why can’t I eat and drink like a normal person? Why do I worry so much? Why can’t I just stop thinking and worrying about stupid shit for like 5 minutes?
Since I believe – even though I don’t yet practice it – empathy is a huge part of self-care with chronic illness, these are some steps I am putting into place for myself, especially when I feel my worst:
- VALIDATE MY FEELINGS AND THOUGHTS – ALL OF THEM – EVEN IF THEY DO SEEM RIDICULOUS. They are still my brain trying to process life so they still matter, no matter what.
- Say to myself, I’m so sorry you feel this way, Amy. How can I help? What do you need?
- Keep a food and mood log to help me see how what I eat affects my body physically and emotionally so I can make better choices for myself depending on what is going on. (This actually really helped me figure out this month that dairy is a huge trigger for stomach issues when my abdomen is inflamed and irritated due to endometriosis flare-ups.)
- Focus more on what I can do instead of what I cannot to help me out of that negative thought pattern when I am struggling.
- Thank my body for doing the best it can with what it’s got.
- Rest when I need to rest.
- Practice being gentler with myself and replacing my critical thoughts with more encouraging and kinder thoughts.
How do take care of yourself when you don’t feel good? In what ways can you express more empathy and grace towards yourself? I really need help in this department so I would love to hear your thoughts and experiences.