On the face of things I have a great deal to be upset about. Four years ago I was diagnosed with the incurable illness endometriosis. A disease so painful and life-altering that many older women with endometriosis call it the curse.
Despite what people may think about an illness many still believe to effect women one to five days a month during their period, I am in daily, agonising pain.
I struggled to understand what was wrong with me for most of my adult life. I seemed to be a walking heap of problems from the day I reached puberty. Aches and pains. Period pain that would make me pass out. Exhaustion while doing very little.
Many years later I am bogged down with all the clutter and ill-health that comes with a chronic illness. It plagues me every day, looming behind every thought. Illness is still the first thing that greets me each morning.
Strangely though, despite all the emotion of the last four years I am the happiest I have ever been.
Mostly from a lot of work… Let me explain.
Not too long ago someone I know declared helpfully that I seemed far too happy to be seriously ill. I had to chuckle at that, as if they were somehow implying that I wasn’t really ill.
Such is the perverse logic of people not troubled by illness.
I hate to break the perceptions that people have of disease, but it’s perfectly possible to be chronically ill and happy. This is the great epiphany that comes with acceptance of your illness and your new limitations. Yes it is upsetting for a good long while, you can dwell on what you can no longer do, or you can simply remark and triumph on what’s left – which is always a great deal, no matter how you cut it.
Many people who go on to accept chronic illness find pleasure in little things. In being alive, in laughing, or being surrounded by the people they love.
It doesn’t mean that I’ve bested an incurable illness, it simply means that I’ve found a reliable and more positive way to cope with my lot.
I get a great deal of strength from the empowerment I feel from not letting endometriosis get to me. It does its best to hurt me, to strain and suffocate me with despair, and I’ve learnt slowly but surely to just turn away and get on with life. That’s not to say I am ignoring my illness, I’m just no longer letting it be the master of me.
Endometriosis is a big part of who I am, and it forms a huge part of my identity now. It’s one of the first things that springs to mind when I have to describe myself, and it’s very hard and awkward to put something so huge and unwieldy that’s lodged deep inside of my mind and push it out of the way, but it’s very important that we all try to do this as often are we are able.
Most importantly though I’ve learnt (very slowly as the months pass) to let it fall behind me, and let more of the traits, interests and enjoyable aspects of my life come to the forefront a lot more.
Think of illness like your shadow on a hot summer’s day. You can look down upon it and focus on how black and empty and solemn your empty outline is, or you can turn around and enjoy the lovely weather.
Baby steps towards acceptance
Here are the small things I try to remind myself of that’s helped me to accept chronic illness in my life.
Figure out what you can still do
Rather than focusing on what you cannot do anymore, focus on what you still can. Before I become ill I was a very keen drummer. It formed a very large part of my identity. I still occasionally manage to get on the drums from time to time, but realistically I won’t be able to do it anywhere near as much as I used to. Instead I’ve taken up new hobbies that give me the same amount of pleasure, but aren’t quite as demanding on my body.
Figure out what it was about the thing you enjoyed doing before and think of similar things that create the same highs. You might surprise yourself with what you can still accomplish.
Here’s an example of what I mean. I replaced my love of drumming with two hobbies that tapped into the same positives drumming gave me.
Knitting is a great low energy activity that gives me the same sense of accomplishment and creativity. It requires the same ability to learn new skills, and it involves keeping my hands busy as drumming used to. Crucially it helps clear my mind, keeps me relaxed and helps me to stay awake when the fatigue is really bad.
Drumming was great exercise and I found it a great way to relax after a hard week. So I took up cycling to fill that gap. It was something I used to do years ago when I was younger (like drumming) so it was something I could take up again with the same sense of nostalgia. I have a lovely electric bike that is very comfortable to ride, with a cushioned seat (which helps me keep a straight back) as such I actually find cycling more comfortable and pain free than walking.
Doing a little bit of exercise really does help, I know it seems impossible on the worst days of pain, but I certainly feel better the days following my cycling activities than the days I don’t bother.
If doing any sort of exercise, always listen to your body and take note of the signs that it’s had enough. Always stop a bit before you’re stretching yourself too much to make sure that you’re never pushing yourself too hard.
Above all, experiment with things that you’ve never tried before. Use the time you feel unwell for something more positive and the pain and sense of loss from your chronic illness will be easier to cope with.
Surround yourself with people that understand your illness
This goes almost without saying, but illness has a way of galvanising your closest and truest friendships. You certainly find out who your friends really are when times are trying. You won’t have to constantly explain to a good friend. They’ll understand what you’re going through, and start to help you in ways only a good friend can.
If you’re worried about neglecting a friend because you can no longer do some of the things you used to do together, find new things that you can do together as a new way to nourish your relationship. It’s another great way to find new hobbies that you can actively enjoy to replace the things you’ve had to leave behind.
This doesn’t necessarily mean being active, but it does mean keeping your mind occupied so you’re not constantly beaten up by chronic illness.
I tend to cope better with the pain when my mind is kept together – focused on something. Your mind is still as sharp as it always was and it needs nourishment and care like the rest of your body. Stay focused on something, give yourself little goals for the day and set aside time for yourself to keep you hopeful and ready for when you can manage more.
Understand that some pain will remain with you
In many ways there are no way ways to go back to how things used to be before. A big part of acceptance of your chronic illness is reminding yourself of how you need to move forward rather than constantly looking back and wishing things were different.
I don’t like wishing – and hope for the future is a far better incentive. This means staying optimistic about what you have left and looking forward to what you enjoy and what you hope to do again. Eventually life will become exciting again and you’ll be reminded of that old feeling you had where life was a series of endless horizons stretching before you rather than one, long limitation.
I feel like I’m always commenting on here saying how good your posts are, but they really are, so I thought I’d say it again. I’m continually learning my limitations and trying to figure out what I can still do too after my diagnosis last March. I’m looking forward to what I’ll be like a few years from now when I’ve got it more sorted and am more consistently happy like you. I actually think having to deal with limitations at a young age is in some ways a blessing from endo, even though it is hard at first. I think in the end I’ll end up happier than I would be without endo (hopefully!)
PS I’m getting through my first day back at work by listening to ridiculously catchy and positive pop music. Totally works.
Thank you Libby. Knowing my posts help even one person each time I put them up makes it all so much easier to keep going and writing each week.
I wanted to start the new year with a very positive post, but I know endometriosis is far from simple, and I know that fighting it is a big ask. I am several years down the line of treatment now and want to continue to give hope to those newly diagnosed or those that need a boost.
Hoping to continue with an even more practical next post!
I have put down a horrific day in my job as my fatigue is unbeliveably bad and I just wanted to say thanks. So much of your post makes me feel like I am not the only person suffering every day. No words can explain what it is like to have endo but in a contradictory way words and expressing how you feel can help convey the real meaning of endometriosis.
Aine (endo girl in pain every dayxx
Yes, knowing we’re not all alone in this is a great comfort to me too. Thank you for taking the time to let me know that you found this helpful, I really do appreciate it.
I love this! I am also in pain daily and struggle with other chronic illnesses!! Thank you for such an inspiring post!!! I hope that you are able to get the relief that you truly deserve!!!
Thank you dearest, I’m so glad that you liked the post. Hope you have a wonderful new year.
Reblogged this on endoawareness and commented:
A wonderfully written piece on postive feeling when living with endometriosis.
You can be ill and happy – by ENDOhope
Your approach is an uplift to all who suffers day to day. Know you made a difference.
Endohope i have to say, I have been sitting here for the past hour and a half reading through your blog and I feel like I want to go bike riding right now. lol.
I have been suffering from excruciating periods with passing out on the first day every month ever since I was 14 and got diagnosed with endo in January. I have been working up until last month and unfortunately since May I was not able to return to work and lost my job after 5 hardchore months of pain and two laparoscopies that didn’t have the wished for results. I have tried different birth controls and am currently on percocet for the pain which is the only thing that helps for a couple of hours but is also no longterm solution since it is a strong narcotic. I have to say your posts really cheered me up on a level that no one could so far. I have seen “friends” get less understandable or become irritated or simply just not interested enough anymore to listen or even ask and then the ones that are still going through it with me day by day. I moved to the US in 18months ago from germany, so to find friends that I can truly count on after such a short time is amazing and something that i am grateful for. I am fascinated on how you cope with endo for so many years and honestly inspired by what you accomplish day by day. Only women with endo truly understand what it’s like to have pain 24hours 365 days a year like me. I feel for all those women out there, but I am also thankful I am not the only one and surely not “crazy” or “imagining the pain”. Long story short I really just wanted to say thank you to all the women that post comments or stories (successful stories or sad ones) on here to help others or just to seek help. You are not alone and I hope one day they will find a cure. Until the ENDOHOPE I would love to read more about how you manage to go to work, get on your bike… whatever it might be. It really helped me and today is the first day in over 5 months, that I actually feel like I might be able to change something.
Thank you so much. It’s comments like yours that help me keep going with this little website 🙂
Hopefully you’ve read my update about cycling with endometriosis.
Working with endometriosis is another favourite topic of mine and I hope to be writing shortly about some of the mechanisms I use day-to-day to manage with pain in more detail as I’ve had a lot of requests about it. It just takes some time to write it all up. 🙂
I have only just reached this exact same moment in my journey with endo. It’s such a refreshing feeling compared to being so down and bitter about it all the time – and I’m glad others are feeling the joy I am! 🙂 I had a day a few weeks ago where I realised, if I wanted knowledge about my disease and if I wanted to feel better… I had to be the one to make that change. No one else, because like you would know, there isn’t much support in the medical world. Keep it up 🙂