Ok, so there isn’t really an upside to endo. It’s a horrific disease and it causes all kinds of awfulness. However, a post on a chronic pain blog, Notebooks and Glasses, really caught my attention this week. It’s called “Why Chronic Pain can be a Good Thing.” Now, whilst I agree with some of the content that the author, Ali, has written about, I have to strongly disagree with the title.
Like Ali, I’ve learned a lot of lessons through the pain I’ve been through. Not of all the lessons have been good, but some of them have. Do I think it’s worth it? Absolutely not. I would very much like to go back to my state of blissful, pre-endo ignorance and would willing chuck any and all self-development that may have occurred. The lessons may be good but they are simply not worth the cost.
Perhaps my view is too negative and cynical. In fact, I strongly suspect Ali’s mindset is much healthier, happier and kinder than mine, even if I can’t agree with it. That being said, Ali’s post has very much inspired me to start the month on a more positive note, and talk about some of the good things that I have learned and experienced through suffering from endometriosis.
1) I deeply appreciate my family’s love for me.
My mother has always been a superstar. She gave up her job in the civil service to raise me and my sister, which is not something I think I could do, so I greatly admire it. She has always been there for the big and the small, and I’ve really been spoiled by having her constantly available for me. I like to think I’ve always appreciated it, but now that my need is greater, I think I took it for granted when I was younger.
I moved out shortly before my endometriosis diagnosis, to live about half an hour away. That did not stop my mother from driving up to my cruddy little apartment whenever I needed her, or even further to the home (still a bit cruddy, just on a much bigger scale) I later shared with my husband. Now I’ve moved still further away (about 35-40 minutes) and she still comes through for me. She looked after my pet rats when I was too sick to manage. She makes me food and does my shopping when I can’t stand. She comes armed with rubber gloves and a lot of determination, and cleans the kitchen that I let get messy. I am hugely indebted to her (financially as well as emotionally), and seeing her still brings me a childish comfort and sense of security that I can’t adequately put into words.
My dad has also kicked in with his usual determination, researching the backside out of endometriosis, and bringing my attention to every article he comes across on the topic. He’s also come over and fixed a bunch of stuff in my house for me, despite being allergic to my cat.
My husband is also amazing. He works incredibly hard to secure an income, which is very important for when I can’t work. When he gets home, he makes me dinner, brings me anything I need, walks the dog, and lies on the sofa next to me rather than doing fun, normal-person friends. He thinks I’m pretty even when I am bloated, covered in hormonal acne, and haven’t brushed my hair in a week. Love truly is blind. He is the one that pushed me into a third opinion after my disastrous first surgery, did the research, took time off work, drove me to Sydney, and stayed by my side the whole time.
I know he swore to stay with me in sickness and in health, but neither of us expected there to be quite so much sickness. I love him even more than I did when we first married, and he is so faithful, kind and generous that I only wish I could be the kind of wife he deserves.
My family’s love has been put to the test by the things I constantly have to ask them to do, but they step up every time and I could not possibly be more grateful or appreciative.
2) I have mechanisms for dealing with really bad pain
I can take more pain than I ever thought possible. I’ve developed ways that work for me of enduring it. Sometimes that does involve crying, but there’s no shame in that. Sometimes it is just lying there and disassociating. Whatever I need to do, I can get through the pain, because I have to.
3) I am more confident in stating my needs
Knowing when you have to say “No,” or “I need this,” is one thing. Actually being able to do it is quite another. I’m still not great at it (my husband can tell you that) but I am getting better. It’s a vital skill and it gets better with practice.
4) I take greater delight in simple things
I have always enjoyed simple things, like the sun on my face or the smell of flowers. My appreciation of them has increased tenfold since I had endo. Endo – any chronic pain, really – teaches you the value of grabbing the small things and milking them for all they are worth. You become much more conscious of your body and how it feels all the time, so I notice when I’m not in pain and I luxuriate in it. Add in some gentle sunny warmth, my animals at my side, and the scent of the roses in my garden, and I’m basically in heaven. That moment would legitimately make me cry in happiness, whereas before it would have been, “Oh, this is nice.”
5) I started this blog
That may sound a bit trivial, but I’ve always loved writing. I basically did my Honours in English for the heck of it (tell me why else someone would write 25,000 words on feminism in vampire novels and pay for the privilege). This blog has reawakened that love and allowed me to channel it in a much more useful direction. It’s more rewarding than a diary, and I like to think it might help some people.
6) I am more aware of my own privilege
That may sound like a funny thing to say, but losing my health has really made me treasure what I have left. Having my employment threatened has shown me the value of a steady income. Having to spend money on operations and medication has shown me just how hard it would be if I had less.
There are people who are far worse off than me; suffering more physically, unemployed, with no income and no support network. This doesn’t make my pain any less difficult to deal with, but it does demonstrate how lucky I am to have what I do have.
7) I have a plan B
I’d never really considered what I would do if my career in the law didn’t work out. I think, perhaps, it’s because I had too many options. I was fit and healthy. I could have gone and worked as a police officer or a ranger or something really physical. Now I’ve been forced to formulate a plan B that takes into account my illness, and a plan C and D in case that doesn’t work out. I wish I didn’t need the options, but it is good to have a back-up plan (or two).
To be honest, I can’t think of any more. I wanted to make a nice round ten, but I’ve topped out here. It is something I will give more thought, and if I think of more, I will write a second post on it.
Have there been any positives for you in your endo experience? What has it taught you? Would you ever say it has been worth it? Let me know in the comments.
5 thoughts on “The Upside of Endo”
Thank you for letting me know about this post. I’m so pleased it got you thinking more positively and you wrote a post about the upsides of your pain. Although I don’t write about it much in my blog, I have endo too so I certainly understand how painful and debilitating it can be. 21 years of pain and no ending in site. It’s an horrendous condition so you have my sympathy and empathy – you’ve done well to see the positives; even more so to write about them.
In all honesty, the title of my post was to grab my readers’ attention; I wanted it to get people thinking differently – exactly how you have, in that it’s not 100% a good thing, but some positives are there when we delve deep enough. And you’re right, I am in a pretty good place with my chronic pain so I find the positives much easier to see. On the days when I have endo pain on top, it’s a whole different story. But overall I see more positives than negatives. Thank you again for sharing your thoughts. Ali x
Thank you so much for reading, and for writing your post in the first place! Always so good to connect with other bloggers struggling with this disease xx