“Most of our relationships aren’t 24/7. People outside our home usually only see us on “good days.” It’s not hard for illness to seem unreal to them.”
You may have seen something to this tune on DoILookSick’s twitter during the Health Activist Chat yesterday (which happens every Tuesday afternoon, if you’re interested in participating). If you’re a friend or relative of mine, you are one of those people that only sees me on good days, I promise. It’s really hard to find the right words and the right way to explain what my day to day life is really like.
The blog “Oh What a Pain in the…” created a fantastic awareness quiz for Invisible Illness Week that I’ll be filling out here, and what’s awesome about it is it very simply sets up the right time and place for me to let you all know what’s really going on. A lot of health bloggers lament that no one ever wants to hear about illness, but I don’t think that’s true. I think everyone is dying to know what’s really going on, but nobody knows how to talk about it. Well, here it is! All the things you’ve wanted to ask but didn’t know how, and all the things I’ve wanted to say, but didn’t know when I could.
The Truth About Rachel:
1. What condition(s) do you have that have led you to living with chronic pain?
I have endometriosis, which is an illness that one is born with. It’s a condition caused by the shape of my uterus and fallopian tubes. Basically, mine’s not perfect, so the endometrial lining of my uterus ends up in places where it doesn’t belong and causes pain. While these spots of endo can be removed, it will continue coming back unless you have everything removed, making endo an incurable disease.
I also have a “bell-shaped colon,” which just means that my intestines are a little looser than most people’s and mine kind of flops around. This is completely benign and not a problem at all – UNLESS YOU HAVE ENDO. In which case your floppy organs will beat the crap out of your already painful endo spots.
My latest chronic pain addition – a small hernia. Just the little cherry on top of it all.
2. What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it no one is saying about life with chronic pain? )
I want people to know it’s out there, and it’s hard. Living life with chronic pain is like playing a video game on expert mode when everyone else is on normal. We have the same jobs, the same schoolwork, the same social obligations, the same walk to the bus – and I can do all that stuff. It’s just a lot harder. Things may take me longer to do, and I’ll “die” a lot more than you. Please don’t get frustrated with me – I am trying really hard. I’m not lazy. I do care.
3. Which philosophy do you ascribe to: Keep hoping that the pain will get better or learn to adapt to life with chronic pain?
I wish I could adapt. Maybe it’s a sign of weakness, but I know I live my whole life hoping the pain will get better. Endo is incurable, but there’s an 80% chance that after pregnancy, when your uterus shrinks back to it’s normal size, it may naturally cure itself by reshaping and repositioning. But I’ve got to try. When people ask where I see myself in ten years, in my head my honest answer is “healthy, endo free.” I have never planned on living with it.
4. What do you miss the most that you feel you gave up because of chronic pain? What do you do now to fill that void?
Oh, colorguard. I miss that the most. I’ve kept all my equipment, and I try to practice at least once a week. I had wanted to march professionally and continue dancing competitively, but it’s just not an option anymore. My husband and I signed up to audition for the talent show at my university, and I wrote a colorguard duet for us to the song “Gangnam Style.” However, the audition is this Saturday, and I haven’t been able to put as much time into practicing as I wish I could. So we’ll see if it works out or not.
5. What have you heard from others that made you feel better?
Mostly just when people want to be an active part of my life. I like it when people ask how I’m doing today, and I love it when people ask me specific questions about my illness. I guess anything that shows that people want to know and love the new me, and want to adapt our relationship to these less than perfect conditions. It’s hard to think of a specific thing I’ve been told. I read a lot of beautiful things on other blogs, but it’s extremely rare that anyone says anything to me about being sick.
The only people that do are my husband and my doctor, both of whom have been very encouraging and have not allowed me to fall into despair. My husband tells me it’s not my fault, and that we can beat it. My doctor fosters my belief that I can get better, and is quick to nip all my fears and freak outs in the bud. In fact, when he told me it was endo, he pretty much said “It’s endometriosis, but it’s okay.”
6. Do you feel that people view/treat you differently? How?
No. But I often wish they would, especially family. With people who knew me “before,” I’m expected to be the same person and do all the same things. Sometimes I can, and sometimes I can’t. People cut me slack if I just had surgery, but after about a month they have no reason to think I’m not all better, right? People just don’t understand that I won’t get better. I’ll have good days, but I won’t get well. Things make me tired, I have trouble staying up late, I’m obsessed with finding a place to sit down…and with the best intentions, most people just push me to keep going.
7. What coping mechanisms have you tried that worked for you? Which ones did not work for you? (Traditional and Non-traditional)
I’ve had two surgeries to remove endo. The first one made me worlds better, the second one provided very little relief. With endo, I’m basically sentenced to surgeries that may or may not relieve pain for the rest of my life, until I either remove or reshape my uterus. After going through surgery and having it not help, I’m ready to try other things to say the least! There are new studies coming out saying that mother-to-daughter uterus transplant may be a new cure, but it’s not for sure yet, plus how can you ask your mom for a body part if you’re not like, terminal, right?
I’ve been researching and talking to my doctor about pregnancy as a treatment, and while it seems promising, I’m still 22 and in college, so it’s not like I can just decide to go for it. Plus, even if I do wait until I graduate and get a job and all that, people are going to judge me. Strangers will probably judge me because I’m young and look younger than I am, and I’m also afraid people I know will judge me for procreating when there’s a chance my child could be born sick (even though there’s no genetic ties to endo – nobody knows, nobody cares).
I’ve tried a few kinds of pain meds. Vicodin works best, though I developed a small allergy to it at one point. My body seems to have gotten over it. When I first developed the allergy, my doctor said stop taking it, and moved me to Tramadol. TRAMADOL SUCKS, and that’s all I have to say about that. So, during some desperate times, doc said to take Vicodin with Benadryl, and slowly I moved back to just vicodin and now there’s no allergic reaction. As far as frequency, I’ve had years where I took it 3 times, and then there are times like now where I’m taking it every other day, almost daily. Not doing so well lately, as you may have noticed with the lack of blog posts.
I’ve tried herbal supplemetns, St. Johns Wort and Relora. St. Johns helped, but when I started hormone treatment I had to stop – St. John and birth control don’t play well together. Relora made my stomach feel awful, I wouldn’t recommend it to anyone.
I’ve been on regular hormone treatments, but they just weren’t helping enough, so now I’m on seasonique, which is a much higher dose of hormones. It held endo off for 3 whole years at one point. It has since stopped working as well, but I stand by it. It did me good, and I highly recommend it for endo.
The number 1 thing that has decreased pain and increased my quality of life is VITAMINS. A daily multivitamin makes a huge difference. I’m less fatigued, less moody, I have more strength and energy, I eat better, and I just plain feel better.
I hope this answered some of your questions about me and my illness, and I hope you have a better idea of what life with chronic pain is like. I’m sorry if this post was more serious than usual. Like I said, I haven’t been feeling great lately, and that always makes me a little more stern and serious in my awareness efforts. I hope to return to my usual quirky sarcasm soon.
Be sure to check out the “Oh What a Pain in the…” blog, and please fill out the quiz yourself! This is a great way to educate people and spread awareness. I look forward to reading some of your answers! Please send me a link if you fill it out, and send one to “Oh What a Pain in the…” Or feel free to post your responses here in the comments if you don’t have a blog of your own.