In case you didn't know, this week (Sept. 28 - Oct. 4) is Invisible Illness Awareness Week. I'm guessing that if you're not already in the chronic illness community (and I'm hoping you're not, because that would mean you or someone very close to you is chronically ill), then you didn't know. In fact, if you're not already living with one, chances are you really don't even think about "invisible illnesses" at all. That's why we need a week like this to begin with.
This year's theme is #MyInvisibleFight. I was originally planning to write a full piece in that theme, focusing on some aspect of the many battles those of us with invisible illnesses have to fight. I'm still hoping to get to that by the end of the week, but until then, there's this. The #IIWK movement has offered as a starting point, this 30 Things prompt. So without further ado ...
1. The illness I live with is: Illness? Try illnesses - there are so many! The biggest ones are Fibromyalgia and Adult Onset Still's Disease (sort of like a cross between Lupus and RA). I've also got IBS, Chronic Migraine (and other types of chronic headache), Hashimoto's (autoimmune) Thyroiditis, GERD (which then caused gastritis, erosive esophagitis, hiatal hernia, and now a gastric ulcer), and Endometriosis (and formerly fibroids, but they were removed with a hysterectomy when I was 33). In case I missed any - or you want more info, you can read more about my illnesses here.
2. I was diagnosed with it in the year: Let's see ... fibro in '12, AOSD in '15, IBS around 2003 (doc had said "spastic colon" before IBS was known, in around '90 or so), migraine in '15, GERD in '14, ulcers in '89 and '15, endometriosis around '93
3. But I had symptoms since: GI issues since 3rd grade ('82-83), GYN issues, &; headaches since high school (late '80s), fibro symptoms since 2007, AOSD since '11.
4. The biggest adjustment I’ve had to make is: not working full time. There's a conversation between Morgan Freeman and Monica Potter in the movie Along Came a Spider in which they debate whether "you are what you do" or "you do what you are." For me, it was both, so if I wasn't "doing" then I didn't know what was left. If I was doing nothing, that seemed to mean that I was nothing.
5. Most people assume: it can't possibly be as bad as I'm saying it is (which is ironic, because I usually don't say anywhere near as bad as it actually is).
6. The hardest part about mornings are: (yikes - am I really putting this down for the whole world to see?) let's just say bathroom issues and move on really quickly ;)
7. My favorite medical TV show is: House, MD. There's one episode that stands out more than any other, when a patient was brought in after attempting suicide. He'd done it because he was living with unbearable pain every day, and just wanted it to be over. Naturally, they ordered psych tests, and insisted that he was "just depressed" (like so many of us have been told - like this). Dr. House, having lived with daily pain himself, offered this correction: "he's not in pain because he's depressed; he's depressed because he's in pain." I wish we could plaster that idea on the walls of every hospital and doctor's office, so they would remember that and not be so quick to dismiss us.
8. A gadget I couldn’t live without is: my hubby. Ok, he's not really a "gadget" per se, but I couldn't think of any item, device, or tool that I use that much (aside from my coffee maker). But he is the one who opens jars when I can't, who washes the dishes when I can't, who takes off my shoes when I can't, who carries the bags when I can't, who offers his shoulder for me to lean on or his arm for me to hold when walking on unsteady ground (or steady ground whenever I need it). I could go on and on, but you get the idea (not to mention all the other reasons he's so awesome in general). He is who/what I couldn't live without.
9. The hardest part about nights are: being so tired that I can't keep my eyes open, but when I go to bed, not being able to get comfortable/not being able to sleep.
10. Each day I take 20 pills &; vitamins, (once a week, that number jumps to 26), and I also give myself one injection every day.
11. Regarding alternative treatments I: have tried them, have had great experiences with most of them, but they're not enough to manage my illnesses without medication, and they're not covered by insurance, so they're too expensive to do on a regular basis.
12. If I had to choose between an invisible illness or visible I would choose: All other things being equal, I think I'd actually choose visible. Sure, it would affect my self-esteem (as if that wasn't low enough already), but because it is so hard for people to reconcile how I look with what's going on inside my body, it leads to lack of understanding and false judgements by people all around us. It leads to problems at work when employers or coworkers don't understand, to loneliness when friends and family don't understand, and even delayed or missed diagnoses when doctors don't look deep enough. Sadly, seeing is believing.
13. Regarding working and career: I hate that I'm no longer able to do what I used to, and I'm grateful for my current situation, which allows me to work (part time, from home) around my limitations.
14. People would be surprised to know: how much pain I'm in at the times when they see me smiling and socializing.
15. The hardest thing to accept about my new reality has been: that that's really what this is: a new reality. It's not a short term thing that I'll get over. It's not going to get better. There are no cures (and I'm not even doing so well with managing the symptoms), and this is just what my life is now.
16. Something I never thought I could do with my illness that I did was: become an advocate who goes to Washington, DC to speak with politicians about illness related legislative issues. I missed my last DC trip because I was too sick to go, but I'll be there again in a few days, and I'll make up for lost time.
17. The commercials about my illness: make me crazy. For starters, there are no commercials for AOSD, so most people haven't even heard of that. But the commercials for other similar diseases (RA, PsA) make it seem like we can get diagnosed and treated perfectly within a very short time, and that the treatment will allow us to be as fully active as we ever were before illness. The reality is that it takes most people YEARS to get diagnosed, and a long period of trial and error to find the right treatment combination after that. Even with proper diagnosis and treatment, we still have limitations because of our illnesses. We're still sick - we're just hoping the treatment will slow the progression of our disease. As for the fibromyalgia commercials, they make it seem like we're just depressed. And for all of them, what I really hate (though this is more about the drugs themselves than the commercials) is how long the disclaimer is, listing all the things that the drugs can do to you instead of for you.
18. Something I really miss doing since I was diagnosed is: first thing that just came to mind: climbing the rock wall on the ship when I go on cruises. With a second more thought: being low maintenance. I used to be able to pick up on a moment's notice and go anywhere, do anything. Now, I've got to think about how I'll be able to do it - is it too strenuous, will I be in the sun, will it rain (or snow), be too hot or too cold, how much medication do I have to bring with me, will there be sick people around (with a weakened immune system, I've got to be cautious) ... I've got to pack a bag with medication, first aid kit, heat pads, ice packs (both to keep the medication cool and for me), umbrella, sunscreen, sweater, fan, TENS unit, acupressure mat, etc.) and the bag itself is too heavy for me to carry!
19. It was really hard to have to give up: working (full time), which led to applying for Disability. It's that ultimate step that really highlights the fact that this is real, that I have a disability, that I am disabled because of these illnesses (it was even hard to just type that - read more about that here).
20. A new hobby I have taken up since my diagnosis is: actually, I don't think I have any. I have shifted my volunteering to mostly organizations that focus on my illnesses and activities that can be done from home (online). I still write (not nearly enough), but focus more on illness, because that's a bigger part of my life now. Actually, come to think of it, I didn't start this blog until after I'd thought about a conversation I'd had at a wellness center I was going to (read that story here) ... so I guess that's it - my new hobby is this blog!
21. If I could have one day of feeling normal again I would: Get up early and go out on an adventure with my husband. Something fun and active - like a zipline tour (which is difficult because of all the walking/stairs to get to those heights) ... then of course, coming home with hubby ...
22. My illness has taught me: who my true friends are. It's been really depressing and disappointing to see people who I thought I could count on fade away. On the other hand, it's been really surprising to see people who I wouldn't have expected to really step up.
23. Want to know a secret? One thing people say that gets under my skin is: "Oh, you should try xyz diet/supplement/food." I know you mean well, and I appreciate that you want to help ... but what that really does is show how much you don't understand what I'm dealing with.
24. But I love it when people: give a look, a nod, or a word that just acknowledges that I'm not doing well (whether physically or emotionally). When I was at the synagogue for Rosh Hashanah a couple weeks ago, a woman I'd met a few times looked at me and asked if I was ok. I said yes, because most of the time people don't really want to hear anything else. She looked at me again, and said "well, you look like you could use a hug." And she gave me a hug. And it was perfect. She didn't push to find out what was wrong, because in that moment the "what" didn't really matter (and because she and I don't really have that kind of relationship yet); what mattered was that she could see that I really wasn't ok, and she wanted to offer support. Jules, if you're reading this, thank you again. That small gesture meant more than you could possibly imagine.
25. My favorite motto, scripture, quote that gets me through tough times is: I don't know who said it, and it's really pretty simple: "Every day may not be good, but there is good in every day." Sure, with these illnesses, it's really easy to get buried under all that's wrong, all that hurts, all that we can't do. And it's ok to do that once in a while - even necessary. But what kind of existence would it be if we stayed there? Instead, I choose to focus on the positive. As a friend of mine offered a few years ago when she suggested that when I'm really down I write a list of things that make me smile, it could be as simple as "I love my Keurig!" There's always coffee, there's always my husband, and there's always my mom ... so that means there are at least 3 good things in every day ... and that's just for starters.
26. When someone is diagnosed I’d like to tell them: This sucks (it's the truth, and that has to be acknowledged). But you'll be ok. And you're not alone. And whatever you're feeling, that is valid. You're allowed to feel what you feel about this. And this disease is not your fault. And trust your gut - whether it's a doctor, a new treatment, an activity you feel you may have to cancel, or anything else - if it doesn't feel right to you, don't do it (even if others think you should); if you have a good feeling about something, do it (even if others think you shouldn't). You know your body better than anyone else. And you are not alone - there is a huge (online) chronic illness community that is there for you.
27. Something that has surprised me about living with an illness is: what you can actually "get used to", and how much suffering you can endure without anyone noticing. While most people have to stop and take time to recover from a mild illness or injury, we learn to function and do the best we can no matter what, because we have no other choice. I used to say I could operate at up to an 8 on the "pain scale" without anyone even noticing, without it affecting my work. At around 9, you'll see me wince and maybe slow down or limp a little. That's not always a good thing, though, because it only feeds into the "it can't really be that bad" judgement that we get from others. Unfortunately, I'm beyond that 8 or 9 most of the time now, so I can't fake it as well as I used to.
28. The nicest thing someone did for me when I wasn’t feeling well was: see #24, above (I guess I should have read all the questions before starting to answer them)! Really, it's just the little things: hubby stopping at the pharmacy to pick up a prescription (or milk so I can have my coffee) on his way home from work, my mom coming over and bringing matzo ball soup, a friend sending me an awesome coffee mug designed to look like a pill bottle.
29. I’m involved with Invisible Illness Week because: I can't just sit here and do nothing. These illnesses are bad enough on their own, but the lack of awareness and understanding makes living with them exponentially worse. I may not be able to discover a cure, but if I can help make life just a tiny bit easier for anyone, it's something I've got to do.
30. The fact that you read this list makes me feel: all warm and fuzzy inside. Seriously, it means a lot to know that you care enough to give me your time. Thank you for that. I'm glad I have you in my life (even if only through a computer).
2. I was diagnosed with it in the year: Let's see ... fibro in '12, AOSD in '15, IBS around 2003 (doc had said "spastic colon" before IBS was known, in around '90 or so), migraine in '15, GERD in '14, ulcers in '89 and '15, endometriosis around '93
3. But I had symptoms since: GI issues since 3rd grade ('82-83), GYN issues, &; headaches since high school (late '80s), fibro symptoms since 2007, AOSD since '11.
4. The biggest adjustment I’ve had to make is: not working full time. There's a conversation between Morgan Freeman and Monica Potter in the movie Along Came a Spider in which they debate whether "you are what you do" or "you do what you are." For me, it was both, so if I wasn't "doing" then I didn't know what was left. If I was doing nothing, that seemed to mean that I was nothing.
5. Most people assume: it can't possibly be as bad as I'm saying it is (which is ironic, because I usually don't say anywhere near as bad as it actually is).
6. The hardest part about mornings are: (yikes - am I really putting this down for the whole world to see?) let's just say bathroom issues and move on really quickly ;)
7. My favorite medical TV show is: House, MD. There's one episode that stands out more than any other, when a patient was brought in after attempting suicide. He'd done it because he was living with unbearable pain every day, and just wanted it to be over. Naturally, they ordered psych tests, and insisted that he was "just depressed" (like so many of us have been told - like this). Dr. House, having lived with daily pain himself, offered this correction: "he's not in pain because he's depressed; he's depressed because he's in pain." I wish we could plaster that idea on the walls of every hospital and doctor's office, so they would remember that and not be so quick to dismiss us.
8. A gadget I couldn’t live without is: my hubby. Ok, he's not really a "gadget" per se, but I couldn't think of any item, device, or tool that I use that much (aside from my coffee maker). But he is the one who opens jars when I can't, who washes the dishes when I can't, who takes off my shoes when I can't, who carries the bags when I can't, who offers his shoulder for me to lean on or his arm for me to hold when walking on unsteady ground (or steady ground whenever I need it). I could go on and on, but you get the idea (not to mention all the other reasons he's so awesome in general). He is who/what I couldn't live without.
9. The hardest part about nights are: being so tired that I can't keep my eyes open, but when I go to bed, not being able to get comfortable/not being able to sleep.
11. Regarding alternative treatments I: have tried them, have had great experiences with most of them, but they're not enough to manage my illnesses without medication, and they're not covered by insurance, so they're too expensive to do on a regular basis.
12. If I had to choose between an invisible illness or visible I would choose: All other things being equal, I think I'd actually choose visible. Sure, it would affect my self-esteem (as if that wasn't low enough already), but because it is so hard for people to reconcile how I look with what's going on inside my body, it leads to lack of understanding and false judgements by people all around us. It leads to problems at work when employers or coworkers don't understand, to loneliness when friends and family don't understand, and even delayed or missed diagnoses when doctors don't look deep enough. Sadly, seeing is believing.
13. Regarding working and career: I hate that I'm no longer able to do what I used to, and I'm grateful for my current situation, which allows me to work (part time, from home) around my limitations.
14. People would be surprised to know: how much pain I'm in at the times when they see me smiling and socializing.
15. The hardest thing to accept about my new reality has been: that that's really what this is: a new reality. It's not a short term thing that I'll get over. It's not going to get better. There are no cures (and I'm not even doing so well with managing the symptoms), and this is just what my life is now.
17. The commercials about my illness: make me crazy. For starters, there are no commercials for AOSD, so most people haven't even heard of that. But the commercials for other similar diseases (RA, PsA) make it seem like we can get diagnosed and treated perfectly within a very short time, and that the treatment will allow us to be as fully active as we ever were before illness. The reality is that it takes most people YEARS to get diagnosed, and a long period of trial and error to find the right treatment combination after that. Even with proper diagnosis and treatment, we still have limitations because of our illnesses. We're still sick - we're just hoping the treatment will slow the progression of our disease. As for the fibromyalgia commercials, they make it seem like we're just depressed. And for all of them, what I really hate (though this is more about the drugs themselves than the commercials) is how long the disclaimer is, listing all the things that the drugs can do to you instead of for you.
18. Something I really miss doing since I was diagnosed is: first thing that just came to mind: climbing the rock wall on the ship when I go on cruises. With a second more thought: being low maintenance. I used to be able to pick up on a moment's notice and go anywhere, do anything. Now, I've got to think about how I'll be able to do it - is it too strenuous, will I be in the sun, will it rain (or snow), be too hot or too cold, how much medication do I have to bring with me, will there be sick people around (with a weakened immune system, I've got to be cautious) ... I've got to pack a bag with medication, first aid kit, heat pads, ice packs (both to keep the medication cool and for me), umbrella, sunscreen, sweater, fan, TENS unit, acupressure mat, etc.) and the bag itself is too heavy for me to carry!
19. It was really hard to have to give up: working (full time), which led to applying for Disability. It's that ultimate step that really highlights the fact that this is real, that I have a disability, that I am disabled because of these illnesses (it was even hard to just type that - read more about that here).
21. If I could have one day of feeling normal again I would: Get up early and go out on an adventure with my husband. Something fun and active - like a zipline tour (which is difficult because of all the walking/stairs to get to those heights) ... then of course, coming home with hubby ...
22. My illness has taught me: who my true friends are. It's been really depressing and disappointing to see people who I thought I could count on fade away. On the other hand, it's been really surprising to see people who I wouldn't have expected to really step up.
23. Want to know a secret? One thing people say that gets under my skin is: "Oh, you should try xyz diet/supplement/food." I know you mean well, and I appreciate that you want to help ... but what that really does is show how much you don't understand what I'm dealing with.
24. But I love it when people: give a look, a nod, or a word that just acknowledges that I'm not doing well (whether physically or emotionally). When I was at the synagogue for Rosh Hashanah a couple weeks ago, a woman I'd met a few times looked at me and asked if I was ok. I said yes, because most of the time people don't really want to hear anything else. She looked at me again, and said "well, you look like you could use a hug." And she gave me a hug. And it was perfect. She didn't push to find out what was wrong, because in that moment the "what" didn't really matter (and because she and I don't really have that kind of relationship yet); what mattered was that she could see that I really wasn't ok, and she wanted to offer support. Jules, if you're reading this, thank you again. That small gesture meant more than you could possibly imagine.
25. My favorite motto, scripture, quote that gets me through tough times is: I don't know who said it, and it's really pretty simple: "Every day may not be good, but there is good in every day." Sure, with these illnesses, it's really easy to get buried under all that's wrong, all that hurts, all that we can't do. And it's ok to do that once in a while - even necessary. But what kind of existence would it be if we stayed there? Instead, I choose to focus on the positive. As a friend of mine offered a few years ago when she suggested that when I'm really down I write a list of things that make me smile, it could be as simple as "I love my Keurig!" There's always coffee, there's always my husband, and there's always my mom ... so that means there are at least 3 good things in every day ... and that's just for starters.
26. When someone is diagnosed I’d like to tell them: This sucks (it's the truth, and that has to be acknowledged). But you'll be ok. And you're not alone. And whatever you're feeling, that is valid. You're allowed to feel what you feel about this. And this disease is not your fault. And trust your gut - whether it's a doctor, a new treatment, an activity you feel you may have to cancel, or anything else - if it doesn't feel right to you, don't do it (even if others think you should); if you have a good feeling about something, do it (even if others think you shouldn't). You know your body better than anyone else. And you are not alone - there is a huge (online) chronic illness community that is there for you.
27. Something that has surprised me about living with an illness is: what you can actually "get used to", and how much suffering you can endure without anyone noticing. While most people have to stop and take time to recover from a mild illness or injury, we learn to function and do the best we can no matter what, because we have no other choice. I used to say I could operate at up to an 8 on the "pain scale" without anyone even noticing, without it affecting my work. At around 9, you'll see me wince and maybe slow down or limp a little. That's not always a good thing, though, because it only feeds into the "it can't really be that bad" judgement that we get from others. Unfortunately, I'm beyond that 8 or 9 most of the time now, so I can't fake it as well as I used to.
28. The nicest thing someone did for me when I wasn’t feeling well was: see #24, above (I guess I should have read all the questions before starting to answer them)! Really, it's just the little things: hubby stopping at the pharmacy to pick up a prescription (or milk so I can have my coffee) on his way home from work, my mom coming over and bringing matzo ball soup, a friend sending me an awesome coffee mug designed to look like a pill bottle.
29. I’m involved with Invisible Illness Week because: I can't just sit here and do nothing. These illnesses are bad enough on their own, but the lack of awareness and understanding makes living with them exponentially worse. I may not be able to discover a cure, but if I can help make life just a tiny bit easier for anyone, it's something I've got to do.
30. The fact that you read this list makes me feel: all warm and fuzzy inside. Seriously, it means a lot to know that you care enough to give me your time. Thank you for that. I'm glad I have you in my life (even if only through a computer).
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