Six Things I've Learned from Chronic Illness
2:54 PMLet's start with "Pain scales are stupid." |
Having dealt with endometriosis symptoms for about 13 years and then being diagnosed in December, chronic illness has changed my perspective on a lot of things. This, coupled with my mom's cancer diagnosis being a strong influencing factor in my life, has really molded how I think, make decisions and my general outlook on life. Here are a few things I've learned:
1. Take things one day at a time.
As I've mentioned in previous posts, I have a history of depression and anxiety, which sent me into therapy and put me on anti-depressants to manage my day-to-day symptoms. At the height of my anxiety disorder, I was constantly looking months or even years in advance. My anxiety reared its ugly head the most in my professional life. It was incredibly difficult for me to "turn off" when coming home from work, frantic that I needed to keep working to prevent crises from happening.
So when my endometriosis was officially labeled, full of scary potential symptoms like infertility, worsening pain and other possible conditions, I shocked myself by saying, "I'm not worried about that now."
My mom's cancer diagnosis and my own chronic illness taught me to wake up, assess how I feel that day and take things from there. There is no sense worrying about what you don't know and can't control, and it's taken me a long time to be able to convince myself of that. Some days, I still struggle with that concept, but I've gotten to a point where I'm not worried about how I'll feel in five years. I'm focused on what I can do today.
2. It's okay to ask for help.
My freshman year of college, I was in an abusive relationship. Unsurprisingly, that made it incredibly difficult to focus on homework and classes, and I was struggling to put up a good front for everyone in my life. Around the time that relationship was at its worst, I was dragging myself through finals week, and in a moment of desperation, I broke down and told a professor how I knew I was going to fail this final, that the entire semester had been horrible for me and that I was dealing with some serious personal issues. My professor didn't let me off the hook, of course, but he did surprise me by saying if I would have asked for help earlier, he could have probably worked something out.
For some reason, that thought literally never occurred to me. Why would I ask for help? Why would I risk my pride and ruin the facade that I know all of the answers?
When I was diagnosed with endometriosis, I became very open about my condition for two reason. One, I wanted other women to feel comfortable asking for help. Two, I didn't want there to be any surprises when I eventually needed to ask someone for help, like a surprise day off of work or scheduling around my endless doctor appointments.
Asking for help when you have an illness can be scary. I was worried people would think I couldn't do my job properly, couldn't go out with friends or couldn't function like a normal person. (All of these things, of course, are false.) But typically, rational people don't think that way. And my very rational coworkers, friends and family members recognized I was still the same, capable person.
3. There's nothing wrong with saying "no."
I am addicted to saying "yes." You want someone to chair your committee? Yes, I'll do it. You want someone to come by every week to volunteer at your non-profit? I already volunteer at two others that day, but yes, I will be there. You want someone to be there early, outside at 5 a.m. in the freezing cold? I am not a morning person, and I despise the cold, but yes, I will absolutely stand out there for no real reason.
When my symptoms were at their worst, I had to start learning to say no. I had to cut down my commitments and come to a decision on what was truly important to me. Was it really important to over-commit myself and end up not performing my best because I was too tired, too sore and too prideful to say no? Or was it more important to focus on my home and work priorities and work on getting myself to feel better before committing to other things? This time around, I was humble enough to go for the second option.
There's nothing wrong with volunteering or doing extra work. I consider those two things among my favorite hobbies. But there is something wrong with letting yourself wear down because you're piling too much onto your plate. This goes for completely healthy people, too. I wore myself to pieces one year of college because I kept taking on more and more commitment, but I felt like I was letting people down if I wouldn't be there. Keep this in mind: They were okay before you. They will be okay without you. Focus on taking care of yourself. (Typing this leaves a bad taste in my mouth, so as you can see, this item is still a daily struggle for me.)
4. You deserve guilt-free relaxation.
I went through two big changes related to this around the time of my diagnosis. I started reading more, and I stopped feeling the need to put on makeup and do my hair every single day. Yes, shockingly enough, I actually walk out of my home with no makeup and a flat pixie cut sometimes. This is a big deal for me, considering that I insisted on straightening my hair and wearing makeup every day even while building a house or planting trees for a service project in Atlanta.
Being type-A and an ENFJ (if either of those things actually mean anything), it's always been a struggle for me to fully and completely relax. I'm the type of person who checks her work email at night and on days off, and if I'm not doing something productive, my Protestant guilt sets in. But I've started to get better at letting myself lay on the couch with a heating pad or an electric blanket while reading a book or watching some HGTV. And there's nothing wrong with that.
Endometriosis forced me to learn to take it easy. Whenever a flare up happens, that's my cue to relax. And I shouldn't feel bad about taking time to nap or sprawl out on the couch. You work hard. You deserve that time.
5. You know yourself better than anyone else.
"I thought I was crazy." I can't tell you how many times I and other endometriosis patients have said that sentence. Because for the longest time, our pain and myriad of other symptoms were brushed off as "normal" or "over-exaggerated." But what I've learned with this illness is that you know when something isn't right with you. You know yourself better than anyone, and you shouldn't allow someone to tell you differently.
While going from appointment to appointment and through test after test, it's easy to feel like you're losing your mind. It's hard to be heard over a specialist shaking his head or a doctor who won't suggest another treatment option.
But you deserve to be heard. You know what you need and what you should feel like, and if your current doctor isn't helping you get there, find a new doctor. If your friends or family members aren't supporting you through your frustration or struggles, get a new support network. Don't downplay your needs, thoughts or ideas. You matter, inside and out.
6. Respect your limits, but don't be afraid to push them.
As I've said before in a previous blog post, yoga has done a great job of teaching me this. Throughout my yoga classes and physical therapy, I've learned a lot about my physical limitations, both in regard to endometriosis and my skeletal system.
A long time ago, I would have brushed off yoga by saying, "I'm not flexible. I can't do that. It's just how I am." It's true. I'm not naturally flexible at all. But had I not pushed myself a little bit each day, I never would have found the joy and personal fulfillment that I've discovered through my yoga practice. I never would have toned up my body and grown stronger every day. (Recently, I helped a friend move and surprised everyone around me and myself with how much I could actually lift now.)
That being said, it's important to understand and respect your limits. Endometriosis has really taught me to take it easy on myself and not push myself to 110 percent when it's really more of a 70 percent kind of day. On my bad days, I do yoga in my living room (or not at all) and work from home. On my good days, I yank my husband out of bed and run around the city doing as much as I can in one day. But it's all about taking it slowly, yet steadily, and letting yourself grow and recover at a healthy pace. (This is reason #35625 why I don't like cross fit.)
Above all, dear readers, please know that you can handle so much more than you think you can. You are strong. You can do it. You have people who love and believe in you.
What about you? What have you learned from your endo diagnosis?
EDIT: WHOA! My blog was chosen as one of the Best Endometriosis Awareness Blogs! Y'all are making me misty-eyed over here... But seriously, I'm really surprised and humbled that someone nominated my blog. Heck, I'm surprised and humbled that anyone reads this thing! Check out the full list here.
1. Take things one day at a time.
As I've mentioned in previous posts, I have a history of depression and anxiety, which sent me into therapy and put me on anti-depressants to manage my day-to-day symptoms. At the height of my anxiety disorder, I was constantly looking months or even years in advance. My anxiety reared its ugly head the most in my professional life. It was incredibly difficult for me to "turn off" when coming home from work, frantic that I needed to keep working to prevent crises from happening.
So when my endometriosis was officially labeled, full of scary potential symptoms like infertility, worsening pain and other possible conditions, I shocked myself by saying, "I'm not worried about that now."
My mom's cancer diagnosis and my own chronic illness taught me to wake up, assess how I feel that day and take things from there. There is no sense worrying about what you don't know and can't control, and it's taken me a long time to be able to convince myself of that. Some days, I still struggle with that concept, but I've gotten to a point where I'm not worried about how I'll feel in five years. I'm focused on what I can do today.
2. It's okay to ask for help.
My freshman year of college, I was in an abusive relationship. Unsurprisingly, that made it incredibly difficult to focus on homework and classes, and I was struggling to put up a good front for everyone in my life. Around the time that relationship was at its worst, I was dragging myself through finals week, and in a moment of desperation, I broke down and told a professor how I knew I was going to fail this final, that the entire semester had been horrible for me and that I was dealing with some serious personal issues. My professor didn't let me off the hook, of course, but he did surprise me by saying if I would have asked for help earlier, he could have probably worked something out.
For some reason, that thought literally never occurred to me. Why would I ask for help? Why would I risk my pride and ruin the facade that I know all of the answers?
When I was diagnosed with endometriosis, I became very open about my condition for two reason. One, I wanted other women to feel comfortable asking for help. Two, I didn't want there to be any surprises when I eventually needed to ask someone for help, like a surprise day off of work or scheduling around my endless doctor appointments.
Asking for help when you have an illness can be scary. I was worried people would think I couldn't do my job properly, couldn't go out with friends or couldn't function like a normal person. (All of these things, of course, are false.) But typically, rational people don't think that way. And my very rational coworkers, friends and family members recognized I was still the same, capable person.
3. There's nothing wrong with saying "no."
I am addicted to saying "yes." You want someone to chair your committee? Yes, I'll do it. You want someone to come by every week to volunteer at your non-profit? I already volunteer at two others that day, but yes, I will be there. You want someone to be there early, outside at 5 a.m. in the freezing cold? I am not a morning person, and I despise the cold, but yes, I will absolutely stand out there for no real reason.
When my symptoms were at their worst, I had to start learning to say no. I had to cut down my commitments and come to a decision on what was truly important to me. Was it really important to over-commit myself and end up not performing my best because I was too tired, too sore and too prideful to say no? Or was it more important to focus on my home and work priorities and work on getting myself to feel better before committing to other things? This time around, I was humble enough to go for the second option.
There's nothing wrong with volunteering or doing extra work. I consider those two things among my favorite hobbies. But there is something wrong with letting yourself wear down because you're piling too much onto your plate. This goes for completely healthy people, too. I wore myself to pieces one year of college because I kept taking on more and more commitment, but I felt like I was letting people down if I wouldn't be there. Keep this in mind: They were okay before you. They will be okay without you. Focus on taking care of yourself. (Typing this leaves a bad taste in my mouth, so as you can see, this item is still a daily struggle for me.)
4. You deserve guilt-free relaxation.
I went through two big changes related to this around the time of my diagnosis. I started reading more, and I stopped feeling the need to put on makeup and do my hair every single day. Yes, shockingly enough, I actually walk out of my home with no makeup and a flat pixie cut sometimes. This is a big deal for me, considering that I insisted on straightening my hair and wearing makeup every day even while building a house or planting trees for a service project in Atlanta.
Being type-A and an ENFJ (if either of those things actually mean anything), it's always been a struggle for me to fully and completely relax. I'm the type of person who checks her work email at night and on days off, and if I'm not doing something productive, my Protestant guilt sets in. But I've started to get better at letting myself lay on the couch with a heating pad or an electric blanket while reading a book or watching some HGTV. And there's nothing wrong with that.
Endometriosis forced me to learn to take it easy. Whenever a flare up happens, that's my cue to relax. And I shouldn't feel bad about taking time to nap or sprawl out on the couch. You work hard. You deserve that time.
5. You know yourself better than anyone else.
"I thought I was crazy." I can't tell you how many times I and other endometriosis patients have said that sentence. Because for the longest time, our pain and myriad of other symptoms were brushed off as "normal" or "over-exaggerated." But what I've learned with this illness is that you know when something isn't right with you. You know yourself better than anyone, and you shouldn't allow someone to tell you differently.
While going from appointment to appointment and through test after test, it's easy to feel like you're losing your mind. It's hard to be heard over a specialist shaking his head or a doctor who won't suggest another treatment option.
But you deserve to be heard. You know what you need and what you should feel like, and if your current doctor isn't helping you get there, find a new doctor. If your friends or family members aren't supporting you through your frustration or struggles, get a new support network. Don't downplay your needs, thoughts or ideas. You matter, inside and out.
6. Respect your limits, but don't be afraid to push them.
As I've said before in a previous blog post, yoga has done a great job of teaching me this. Throughout my yoga classes and physical therapy, I've learned a lot about my physical limitations, both in regard to endometriosis and my skeletal system.
A long time ago, I would have brushed off yoga by saying, "I'm not flexible. I can't do that. It's just how I am." It's true. I'm not naturally flexible at all. But had I not pushed myself a little bit each day, I never would have found the joy and personal fulfillment that I've discovered through my yoga practice. I never would have toned up my body and grown stronger every day. (Recently, I helped a friend move and surprised everyone around me and myself with how much I could actually lift now.)
That being said, it's important to understand and respect your limits. Endometriosis has really taught me to take it easy on myself and not push myself to 110 percent when it's really more of a 70 percent kind of day. On my bad days, I do yoga in my living room (or not at all) and work from home. On my good days, I yank my husband out of bed and run around the city doing as much as I can in one day. But it's all about taking it slowly, yet steadily, and letting yourself grow and recover at a healthy pace. (This is reason #35625 why I don't like cross fit.)
Above all, dear readers, please know that you can handle so much more than you think you can. You are strong. You can do it. You have people who love and believe in you.
What about you? What have you learned from your endo diagnosis?
EDIT: WHOA! My blog was chosen as one of the Best Endometriosis Awareness Blogs! Y'all are making me misty-eyed over here... But seriously, I'm really surprised and humbled that someone nominated my blog. Heck, I'm surprised and humbled that anyone reads this thing! Check out the full list here.
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