Invisible Illness: 7 ways to be your own advocate
As I pursue my social work degree, my main drive is advocacy. Looking back at my younger years, my ability to advocate for others came from compassion. Though I was a shy child, compassion taught me to use my voice.
The truth is, advocacy was something I often struggled with. Well, only when it came to advocating for myself.
I was just too selective with my words. let a lot of things slide. I would straighten my back and move along without saying much. If I was confused, I would not raise a hand. If I was lost, I would pretend I knew where I was. And if I was hurt, I would wait to see if it met my own definition of “bad enough” before I told.
Advocacy is something that has always been a drive of mine, but it needed to start with me.
I bring up the topic of advocacy because for many reasons I have advocated for myself these past few years. What has been a bigger challenge in self-advocacy is making sure you are being heard.
At the end of my New Years post I wrote that I would strive to advocate for my health for the year ahead. This post will share what I have learned as I have since done just that.
Written by me, a chronic pain sufferer. I write this after my recent Endometriosis diagnosis. Though, I hope all readers can apply this to their own story, reflection, + action.
It is one thing when you tell a doctor you are in pain. It is another thing if the pain is invisible. It is another thing if the blood tests, and radiology results return “normal.” You feel good for a second to hear those words, but then you feel frustrated. I have been in pain for 4+ years. It became my normal, and if it wasn’t “bad enough” I wouldn’t complain. Just a once in a while’s doctors visit where I said, “yeah it’s still there.” About 1 year ago things got worse, so I sought out the testing. In 6 months I was bounced around from 3 providers of different specialties, trying to uncover the cause.
When the first result came back normal I crawled in bed and debated the help I was seeking. Especially the bills to my insurance. 4 months later I was missing classes and googling when it is necessary to go to the ER (yes I am stubborn). When it reached that point I sought out a new specialist and a long-waited appointment at a Boston hospital that I was positive would run more tests. Instead, I was recommended a probiotic and told to come back in 1 month. I could have fought for the testing, but I felt so defeated that I could hardly speak. I left that appointment in tears, and after that next bill came in, I knew I would not be returning to that provider.
I had many appointments that left me feeling so helpless that I would take something to fall asleep, to keep myself from feeling depressed. It didn’t matter if it was 3pm, I decided to sleep my day away. I have had a lot of these days. Days where a phone call to my mom said the words, “I can’t keep doing this.” These days are important too. With an illness, it is days like these that remind you how important it is to bind together every last bit of your strength and be your own damn advocate.
Maybe after the first few specialists scratched their heads and told me nothing was wrong, I would have given up- but I didn’t.
seven suggestions to share
do not hesitate to do your own research.
But do discuss findings with your doctor! It is recommended you don’t read too many WebMD and MayoClinic articles, or try to self diagnose, but by doing so I was able to start conversations with my doctors I would not usually have. Yes, it did make my head spin and create more anxiety at times. I was fortunate enough to have several sit-downs with my PCP where we went through the process of elimination and addressed my concerns.
get a second (third, fourth, fifth) opinion.
**I know this is not always possible.
I could go on a healthcare rant here..because it does break my heart with how long it can take to get a diagnose for an invisible illness. Most people can not afford multiple trial and error doctors visits. But I am including this bullet point because of the number of times I wanted to give up on asking for help. When you are led to believe it is in your head, it’s shameful. It sucks, it hurts, and it’s costly. But if you can..please don’t stop there. The reason I saw too many specialists was because my symptoms were not adding up. I had neurological pain, gastrointestinal issues, chronic fatigue, brain fog, joint pain, pelvic pain, and bladder retention. I saw one doctor, who would refer me to the next.
3. do what you can to remind yourself it isn’t in your head, when others imply it might be.
“Everything looks normal.” I heard those words over and over again. Which should be comforting, except I was still in pain and out of options of what to do differently.
I take pictures of the one symptom I have that is is not invisible. My stomach will blow up like a balloon. Painful bloating leaving me looking pregnant. I would drive with my pants unbuttoned. It’s cute. Many endo warriors take belly pics, and some advise against it because it can be triggering for body image issues. I took the pictures as many do, but I took them because on the low pain days, I wanted to remind myself it was very real.
Without taking a picture, you can validate what you feel in many ways.
4. find what helps in meantime
For me it was an epsom salt bath a day, elevating my legs before, after, and in between shifts at work. Buying and wearing compression socks. Sleeping with a heating pad (total fire hazard but you know-), and cutting out inflammatory foods from my diet. I did not have a cause to my pain, but I knew what made it better and I knew what made it worse!
5. keep track of your symptoms, dates
Mark flares on a calendar, get an app to track symptoms, start a pain journal. Document past doctor’s visits, tests that were done, etc. Document it all.
6. keep light (try)
It’s hard feeling unwell 99% of the time. It is frightening to feel so different from the you that you knew yourself to be.
Take care of that precious mind and heart of yours. Watch shows, listen to music that makes you feel good. Surround yourself with people who make you feel good! Soak in moments of laughter.
Tap into your light. Don’t lose sight of it, even on the darker days.
Self-advocacy takes strength, willpower, and hope. Reminding yourself of your worth, and taking even the smallest efforts to bring light into your day will put you on your path to receiving the care you deserve.
7. don’t be afraid to be bossy, “needy”
Let me first emphasize this: Be patient, and respectful to medical professionals.
They are human too.
But as my bullet point reads, sometimes you have to do a little more to be heard. You need to let someone know when you feel you are not being taken seriously, or are not getting the care you deserve. I tend to worry about burdening or bothering others. Knowing what I needed and asking for it is something I am still working on.
My turnout ..
I found a doctor who looked me in the eyes and apologized it had taken me so many years and so many doctors to find someone who heard and believed every piece of my story.
I didn’t give up on myself..
and I don’t intend to.