Hello dear friends!
Whew- has it really been six years?
It seems like only yesterday I was graduating college, going for long evening runs, and looking ahead at a certain future. And at the same time, it seems like I’ve had Lyme/CFS my whole life, having to savor my limited energy and change even the biggest plans at the drop of a hat. It’s funny what we get used to after long enough, isn’t it? Like going nose-blind in a fish market…
If you had asked me six years ago, if I thought I would still be sick on July 16, 2015, I probably would have shaken my head or maybe burst into tears at the idea. And yet here I am. A totally different person than I was six years ago, but still a person that lives with a chronic illness. And I’m learning to make peace with that.
* Psst- if you haven't read my story yet, now's a good time to head over there! *
Yes, I am absolutely healing. And yes, I know deep down (call it intuition) that I won’t be sick for the rest of my life. But I am exactly where I’m supposed to be right now, and I’m learning to just take this journey one day at a time and not focus on everything I think I “should” be doing by now. And that’s been the hardest part so far- just sitting in the moment and savoring the point in the process where I currently reside. I’m a big go-getter and when I don’t “achieve” what I think I should, I can get frustrated and depressed. But when I look back on the last six years, even with the many ups and downs, I am 110% confident that this challenge has allowed me to grow in ways that I never would have without it. Heck, there are even days that I am downright grateful to have Lyme/CFS (I know, right?) because of the unique perspective it gives me.
This blog post is bittersweet for me to be writing. On one hand, I hoped to be miraculously cured by now and on the other, I know that I’m not “there” yet- I haven’t learned everything I needed to. That and I may not have even landed here; I may not have even started this blog if I wasn’t exactly in the physical and mental space that only my illness could provide. And for that I am grateful.
So I want to share with you seven things that I have learned over the last six years, the life lessons that my chronic illness has taught me. Perhaps you will relate to a few!
1. Don’t judge a book by its cover
Ooooh boy, there’s nothing like a serious health challenge to smack the arrogance right outta ya! Before my CFS came along, I was as judge-y as judge-y was, and I took appearances as true representations of who people were and their status in the world. What they looked like, how they dressed, their profession…all went into my little brain bank and came out as a paper slip with a number on it. I know- I’m ashamed to even admit that, but I’m glad I am totally not like this anymore.
Now that I know what it’s like to live with an invisible illness, I never ever make assumptions about someone based on how they present. Some of this may be simply because I’m older, but most of my perspective comes from being on the receiving end of my previously-held criticisms. Navigating the world as someone who looks completely young and healthy, while hiding my dirty secrets (illness, depression, disabilities, unemployment) really shifted how I existed in the world.
It’s really hard to keep prejudices at bay (it’s only natural from a socio-psychological perspective), but next time you’re out in the world, try not to jump to conclusions about the people you come in contact with. Whether that be about someone’s gender, income, sexual orientation, or disability status…give them a blank slate to build on.
2. Your body really does know best
There were many times that I tried to strong-arm my body into behaving, pushing and prodding, cramming myself into a box that I desperately wanted to be in. I had a bad habit, especially early on, of fighting my body and refusing to trust its inner wisdom. After all, it betrayed me and got really sick and now I cannot trust it to not crash again and again, right? I’m sure you can imagine how that attitude worked out for the both of us.
We are all born with an innate trust and connection with our bodies, and somewhere along the road to adulthood, that relationship is broken. I started punishing my body when I hit adolescence, starving and exercising and picking and cutting it into submission. Then in my early twenties, once I thought we had reached some kind of unspoken agreement to coexist, the big bad illness hit. And it’s taken me years to come back to my body and trust that it knows better than my brain does.
When I relax and allow my cells to speak to me, when I set aside my notions of aggressive “self-improvement”, when I nourish and care for myself…that’s when the real healing takes place. I am still working on connecting with my body again (it can be a lifelong process for some women) through yoga, meditation, and mindful nutrition. But having this illness has brought us closer and more in sync than we have been in decades.
3. Not every day will be miserable
It really hasn’t been the train ride of torture than many people envision. Yes, a lot of the time it’s been extremely hard and yes, I believe that an illness like this, especially at such a young age, steals a piece of your soul. And there is a certain societal expectation that sick people shouldn’t be seen having fun or enjoying themselves- then maybe we aren’t really sick? I know a lot of people with Lyme/CFS that have to deal with this prejudice, and luckily I am surrounded by family and friends that understand that some days will be good and others not so much.
While I did spend some time at the beginning of my illness and my relapse basically housebound, I have accomplished a lot over the last six years, even while being ill. I’ve taken several more college courses, opened up my own photography business, gone on trips to California and Hawaii, kayaked on the reservoir, gone hiking in Boulder, been to the symphony, and taken my dog to obedience classes. And of course, I’ve met and spent time with wonderful people!
Sick people aren’t always miserable, and we shouldn’t expect them to be. If you have a chronically ill friend, encourage their good days and sympathize with their bad days. And of course, never question the authenticity of their illness if you see them having a good time or being more active than usual. See #1…
4. Be flexible with your plans
I’ll admit another little tidbit about past me- she was as rigid and inflexible as they come. Whenever she made a plan, she did it. Correctly and on time, every time. And always expected the same of others. What a buzzkill, am I right?
Now, I understand and respect that my Lyme/CFS has it’s own schedule and that I may have to change or cancel plans at the last minute. And even just a few years ago, it used to make me crazy and I would feel so bad for days afterwards. I was mad at myself for not being “reliable” and afraid that everyone in my life was as rigid as the old me was (thankfully this wasn’t the case), so I learned to resent my illness for making my life unpredictable. And it’s taken me a long time to even begin to let that go, but I’m proud to say I’m a lot more “go with the flow” than I used to be, and am less afraid of the consequences of having to say “no” sometimes or change plans at the last minute.
I know it can be frustrating to deal with people who are like this (we sometimes get the label of “flaky”), but understand that if that person has a chronic illness, it’s probably a heck of a lot more frustrating to them! I wish I could still uphold each and every commitment I make, or plan out my life far in advance, but embracing the flow and allowing for unpredictability has changed my life for the better, and allowed for me to release my grip in other areas of my life as well.
5. You’re stronger than you think you are
It can be all too easy to fall into the role of helpless invalid when you’re smacked down with a serious illness. So much so that it follows you, keeping you stuck even when you’re physically recovering. I had to deal with this quite a bit in my relationship with my partner, and we both slipped into the roles of patient and caregiver and that was incredibly hard to break. It was one of the dynamics that contributed to our downfall, and it wasn’t until I was truly kicked out onto my own butt that I learned how capable I really was.
Fear of failing and especially the fear of relapse was enough to keep me stationary, petrified to tackle the big things independently. But I’m happy to report that no major tragedy has befallen my solo flying self, and I’ve actually grown stronger physically and mentally having to cope with managing everything without a crutch. I’ve driven over 5,000 miles by myself just in the last few months, handled my own medical appointments, managed my own budget, found my own independent joy, and learned to soothe myself in times of sadness, fear, and loneliness.
And I’m not saying you need to put yourself through a divorce or move in order to tap into your inner power. Start small, and know that you are never alone, even when it feels like it!
6. A change in direction doesn’t equal failure
Lots of people are naturally comfortable trying new things and accepting the things that they simply aren’t cut out for. I admire that kind of grace, and I am slowly learning to embody it. This kind of goes hand in hand with #4, but it’s really about how we handle things when life throws a wrench in your plans. It’s the language we use to talk about ourselves, or the way we portray ourselves in society. And frankly, it’s been a hard lesson to learn.
When I first got sick and had to drop out of graduate school, it ate me up inside. All that I had thought about myself and my future vanished just like that. And a few years later I thought I had regained that direction and was poised to re-enter school and a laboratory science career when my major relapse happened. Again I was thrown into the pit of “bad language” and started viewing every roadblock that my CFS presented as some huge personal failure. Even just recently I had to try out, and then turn down, a job that I really enjoyed because it was too physically demanding. But I knew I was getting better with this lesson when I only cried and despaired for a few days before acknowledging that I simply needed to change direction and that I was grateful for the chance to try.
I’ve had to change directions a lot over the past six years. Everything from the huge (jobs, career choices, relationships) to the small (dietary plans, how to arrange the bedroom) has taught me more about this important truth. I am not a failure. And neither are you, regardless where you find yourself sitting right this moment.
7. Be grateful for every challenge
Yes, of course there’s gonna be something about gratitude on this list. But it’s not just some hippy dippy buzzword, I promise. After a certain amount of time, I’ve learned to reflect on my struggles with at least an ounce of gratitude (sometimes it’s mixed with other stuff, but hey, I’m human after all) and see the gifts those struggles have given me. After only six years, I feel about thirty years older, wiser, kinder, and further along in my personal development than I’d ever thought I’d be.
This illness has definitely taken things away from me, but not without providing something else in their places- even if it took me a while to find them. I know that from here on out, things will be just as challenging, perhaps in new ways, but I have a lot more confidence now in facing the road ahead. It does take practice coming back to a place of gratitude, even for those who don’t have a chronic illness, but it’s a worthwhile investment.
I want to take this opportunity to thank you, friend, for being here right where you are right now, reading this blog. It means so much to share my stories with you, and I hope to forge ahead into the unknown with my wonderful tribe of healing adventurers.
Here’s to another year of mending, growing, and connecting!
~ Hoping you feel as well as possible ~