Have I ever told you about the time that I was swindled? Seduced by an impossible idea and so enamoured with it that I caused myself inevitable hardship? It really all boiled down to a word, but the grandiose and appealing idea of that word meant everything to me. The word in question is cure. The hope… that Graves Disease could somehow be cured if I did the right things…
Admitting to myself that this word, this idea could not belong to me was more difficult than dealing with the actual consequences of my reality, living with Graves Disease.
My love affair with the word cure and what it meant for my life with Graves Disease began in 2013.
Almost a year into my diagnosis, I was still knocked flat on my ass and wondering how far down the rabbit hole things would go.
I was working with my doctor to figure out why digestion basically led to pure, unadulterated agony, keeping a food journal and researching possible connections between horrifying digestive issues and Graves Disease when I stumbled into the world of alternative wellness.
Discovering the world of Alternative Wellness was like discovering Narnia – I finally felt like I had hope.
I dove into this world, head first with nothing to lose and became inspired. My food journaling revealed that gluten and I had to break up and after some testing and consulting my doctor suggested that I change my diet. Equipped with my new found inspiration I did just that. But this change wasn’t a simple break up with gluten – this was a 180, flip your diet and lifestyle on its head, make food your medicine and do everything you can to support your wellness and cure yourself thing. Cure being the key word here.
That was and still is a popular idea. All over the internet and in many books you’ll see it appear… discover the correct diet and lifestyle equation and you will cure whatever ails you. It was an idea that I clung to.
I knew that remission was an unlikely possibility, but in my vulnerable state I had become convinced that if I took control of my life and made the necessary changes I could be cured.
There were so many suggestions out there: try this diet, follow these lifestyle habits, make these changes and you will get better. And I did get better. By October of 2013 my symptoms were completely gone, my thyroid was a happy camper and my auto-antibodies were low. I was in remission. But in my mind I had crossed the finish line and if I continued to take the best possible care of myself I would never have to deal with Graves Disease again. I was cured.
When I relapsed a year later I was devastated.
The emotional blow was far more painful than the physical one. And here’s the worst part – because I had been living with the idea that my wellbeing was 100% in my control, relapsing unleashed some incredibly heavy feelings of self-blame… something I don’t think anyone going through a relapse needs to add to their already loaded plate.
That’s one of the problems with this school of thinking – if the key to getting better was in my hands then the relapse must have been my fault.
My first relapse was short lived and I found remission waiting eagerly around the corner. But as many of you may know I have relapsed once more since. And I may relapse again. In fact, I’d be far more surprised if I didn’t. Autoimmune diseases are incurable. And while sometimes that idea is still devastating, heart breaking and frustrating, it’s far healthier for me (and anyone living with an incurable disease) to accept that and move forward as best as I can.
I have a beautiful body that works tirelessly to provide me with life. Unfortunately, through no fault of my own, it also has an immune dysfunction. There are certainly worse things, even as autoimmune diseases go. I have fantastic doctors, medication when I need it, and other treatment options should the need arise.
I also have access to a ton of healthy food and the freedom to create a lifestyle that helps to support my wellbeing. This won’t cure me, but it certainly helps to foster good health. And hey, I’m in remission, which doesn’t always happen. I may have a few unlucky cards in my deck, but I’m pretty blessed to have so much support on hand.
And yet that feeling of blame still sat with me for months.
I was afraid to make the wrong choice and cause another relapse; to not follow the appropriate sequence of actions and fall flat on my ass yet again. I was so afraid that for a long time I barely moved from my comfort zone, lest I cause a relapse again. Heck, sometimes I’m still afraid. I think that’s completely normal. But I work on it and have some wonderful shoulders to lean on when needed.
I know that it is proven that a healthy diet and lifestyle do nothing but help your health and your state of mind is certainly a factor in your wellbeing. Changing my diet and lifestyle were some of the best choices that I have ever made. I do not regret it and I highly recommend it to everyone! Eating and living well will do nothing but help you. But it may not cure you. I wish I understood that in the beginning and saved myself some heartache. I wish that there had been more care placed on language and ideas.
These days, when I’m not feeling well I still stop and ask myself what needs to change in order to best support my needs at the time. But this isn’t out of a place of blame (i.e. What have I done wrong? How did I cause this?), this is from a place of self-love (what do I need? What changes can I make to support my changing needs?)
Moving away from self-blame and towards self-love makes an incredible difference.
It’s a huge step towards learning to accept yourself as you are (disease and all). I have learned that there are aspects of this whole living with a disease thing that I cannot control. There are factors at play that I will never understand. That science doesn’t understand. That I did not do this to myself and it is not my fault. I cannot be cured. I am learning to accept that.
Words are powerful. This is the reason why I’m so open about the incurability of autoimmune diseases like Graves Disease
I sometimes receive e-mails and messages stating that I could be cured if I did whatever the writer considers to be the right things. That my diet isn’t appropriate for someone with an autoimmune disease and I need to follow their instructions. That my language, particularly my use of the word incurable, takes hope away from others and is inappropriate. But words are powerful and the truth is important. Unless a cure for autoimmune diseases is discovered in my lifetime, you will never hear me say that I am cured. I do not wish to swindle you and lead you down the path of devastation that powerful little word led me.
If you are incurable, know that you are still whole.
This is not your fault. And while you can support your wellbeing in many ways, your body is unique and will respond in its own way. Support yourself in whatever way you need, empower yourself with knowledge, lean on your loved ones and work with your health care team. Some things are out of your control, but that doesn’t mean that you have to forge this path alone. Surround yourself with love (including your own) and support yourself as best you can. Incurable doesn’t have to mean insufferable.
Health and love,
Thought of the day: I may not be perfect, but I am not broken.
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