Oh, how many times I have heard this. “You don’t look sick.” I have heard it from friends, family, bosses, doctors, nurses, and random other assholes. But I am sick, and I have been for a long time. When I was a kid, I suffered from severe asthma. You don’t see that business unless you force me to run a mile in gym class and I am doubled over trying to breathe (Now if you see me running, you better run too because there is clearly something bad chasing me. Also note I feel no guilt about tripping you). When I was in my teens, I suffered from severe migraines. You can’t see those either, but I would have stabbed a badger with a spoon to make them stop. Then came the ovarian cysts in my late teens. I have had food allergies my whole life, and you can’t see those, but one peanut is a death sentence.
Invisible illnesses are real, but unless you have had one, you probably don’t understand. “It’s just anxiety… chill out!” “But you ate that same thing yesterday, why is it making you sick now?” Trust me, asshole, if I knew that I would be the happiest person alive.
Twelve years ago about this time I started getting really sick when I would eat. I had no idea why, since it wasn’t anything I hadn’t eaten a million times before. I went to the doctor several times once the vomiting began, but he just shrugged and gave me some anti-nausea medicine. FYI – anti-nausea medicine has never helped me even once. Then I started to get anxious every time I would feel nauseated. And every time I ate. Or thought about eating. Or didn’t. After three months, I ended up in the ER. Again, they gave me anti-anxiety pills and told me to go to my doctor (again) on Monday. I did. Barfing all over the office while waiting for my turn to see him. He gave me a shot and told me that if it got WORSE to come back. Problem is it didn’t get worse. It stayed exactly the same. At the end of that week, I had lost 20 lbs and could barely walk. I finally made my Dad take me back to the doctor’s office. At this point, I was vomiting blood and so weak I couldn’t sit up. The doctor took one look at me and sent me to the hospital. Not to the ER, but directly in-patient. I was there for a week and I got a lot of shrugs and something about a slow emptying stomach. My potassium level was so low I almost died. After a week, they sent me home with a prescription for an acid blocker and a medication they told me not to take unless I absolutely had to because it would cause permanent facial twitching. No actual diagnoses.
Over the past twelve years, it has come and gone, but never gone away. A few years after the initial hospital trip, I started becoming VERY familiar with every ER and hospital room in town. I had good doctors, many horrible tests, and still no real diagnosis. In 2011, my doctors flat-out told me there was nothing wrong with my stomach and that it was all in my head. They told me that the next time it happened I should go to a psychiatric hospital because there wasn’t anything they could do with me. Doctors who make your patients feel crazy – Shame on you. There is a special place in hell for those people. Just because YOU don’t know what is wrong doesn’t mean something isn’t wrong.
Then I got sick again. And taking their terrible advice, I tried to get myself admitted to the psych hospital. Contrary to popular belief, it is REALLY hard to get yourself admitted. Especially when you spend the whole intake barfing and having massive blood pressure issues. But after begging, they finally accepted me. Now, it’s important to note that they asked why I was there and not at a hospital because CLEARLY I was really sick. But buddy when you are desperate, you will try anything to feel better. Even taking a vacay in the cuckoo’s nest. (And that is some scary shit, my friends. I do not recommend it unless you are seriously suicidal) And after 5 days, they sent me home. No better.
3 months later at the ripe old age of 35 I had a heart attack. Not the kind you get from heart disease or a blocked artery, but the kind that is 100% caused by long-term emotional stress. It’s called Broken Heart Syndrome. I think I have blogged about this before, so I won’t go into again. Instead of aspirin therapy, medication, or a surgical intervention, I was told to meditate and take yoga or Tai Chi.
I would love to say that solved things and I went skipping into the future happier and healthier, but it didn’t. I managed to stay out of the hospital for 18 months, but that was just being too stubborn to go. I had to quit working full-time, and working was always a big part of who I was. I love what I do, but I literally couldn’t do it anymore.
Fast-forward to August 2013 and me being on vacation at my in-laws’ house in the Hill Country. I got seriously sick to the point where I couldn’t even deal with the three-hour drive back to Houston to go to a “real” hospital. I ended up in a tiny hospital in San Marcos. I had no insurance, but these people ran every test known to man. After another nuclear gastric emptying test, and every other test they could think of, they told me that I had Gastroparesis. For those unfamiliar, this is a paralysis of the stomach muscle which does not allow for proper and timely digestion of foods eaten. They build up until there is only one way out, and that way is up. Stress makes it worse, because stress and anxiety cause the nerves in the stomach to go dead. Finally! An answer!!
But here is the catch – There is no cure. Mother Fucker! Seriously? I finally find out what is wrong and there is no cure?? Plus, over the years I have also developed Type 2 Diabetes (thanks, PCOS!) and the diet for Gastroparesis is in direct conflict with a healthy diabetic diet. You have GOT to be joking me! So, how do I handle this? They told me to take the face twitching medicine as often as I could, try not to get stressed (HA!), and oh BTW did you know there is a center in Houston dedicated to Gastroparesis and they can install a gastric pacemaker to keep the stomach pumping? Where was that information when I still had insurance?? Why did I have to go to a podunk hospital to get an answer instead of one of the best Medical cities in the country?
Fast forward another year to now – I have insurance again (Thanks, Obamacare!!) and I have been hospitalized 12 times in the past 10 months. Things haven’t gotten much better, but rather than owing an additional $80K to my heart attack bill, I am covered after meeting my out-of-pocket max. I am now working with a new Gastroenterologist who is familiar with my disease and we are working things out. We are also looking into the possibility of having the pacemaker implanted before the end of the year since my insurance should cover it.
But the fact is I am sick. I hate that I can’t work anymore and my poor husband has to carry all of the financial burden. I have a Master’s degree and am damn good at what I do, but the fact is that you cannot hold a job when you are sick all the time, no matter how good you are at what you do. This past week, I started a new gastric medicine to see if that would help, and I ended up having tremendously violent and vivid nightmares every night to the point of waking up in a cold sweat. I ended up in the ER one night. I had a great morning the other day, and then ended up so sick I could barely stand it.
And I am fucking sick of it. There may not be a cure, but I am DONE feeling like a worthless loser because I am sick. It’s time to make a change for the better. I am currently working on a plan to go back to strict clean eating (less processing means less bloat and easier digestion), exercise, and also psychological retraining of my brain. I am starting a support group for others who have similar issues or are just sick of feeling miserable and out of control all the time. I may not cure myself, but I can make the process a little easier.
So all of this has been said because I am going to be publicly blogging my journey. Part of the reason I started Self Saving Princess four years ago was to be honest with people that life is hard, but you CAN make it better. You do have the power within yourself to make your life go the way you want it to go. I am developing an 8-part program for myself that I will outline in the coming days. If people want to follow it, they are welcome. If you want to be part of the support group, email me and let me know (Spammers, suck it.). My goal is always to be honest because if one thing I have been through can help someone else, I have met my objective. Step up to the plate (heh) and work towards saving yourself, whether you are a Princess, a Badass, or just some dude who randomly reads my blog.
Happy Reading and May the Force be with you.
Liz, Self Saving Princess
I am reading this from a hospital room, really glad you blogged about this. It is time that people start behaving with more compassionately towards those who are not outwardly ill. Attitudes need to change. People have enough familiarity with their own bodies to know when there is something wrong, and it should be taken seriously. I love you, my sweet friend. Thanks for being a voice of reason in a sea of arrogance…
I am so sorry that you are back in the hospital, my dear friend. I will be sending lots of good thoughts your way. Hopefully they can provide you with some comfort so that your own invisible illness can be treated. I love you! Please let me know if I can do anything to help.
You are a bad ass. That about sums it up.