To every person who has told me that I should try yoga to help cure my chronic pain,
Firstly, I want to thank you for your concern. I don’t think that you are recommending yoga/peppermint oil/stretching to make me feel worse, I know it comes from a good place. But I do have an issue with the presumption that people with chronic illness haven’t already tried these things, that we haven’t already self advocated. That we don’t try to help ourselves. That we are just complaining, blowing things out of proportion, making things up. That there is a cure out there that we just are not looking hard enough for. That we are lazy.
I am not lazy. I am however well versed in the facts; the dos, the don’ts, and the struggles of living with not one, but three chronic pain conditions, all before the age of twenty. People who suffer with chronic pain soon become experts in their field of suffering. Pioneers, if you will, of experimental treatments, juice cleanses, and stretch routines. I’ve tried working out to ease my pain. Yoga to stretch my muscles. Lavender, peppermint, tea tree, and clary sage oils to soothe my pain, relax my muscles, relax my mind, just relax. I’ve used suppositories of every variety. I’ve had surgery, physiotherapy, acupuncture, and massage therapy. I’ve tried changing my diet more than once. I have tried everything you could think of including drinking (purified, distilled, vitamin enriched) water, standing on my head, while burning incents in my room and praying that I will get up and be pain free. Desperate times call for desperate measures.
The thing about these different yoga poses and essential oils is that they may help to ease some of the symptoms, but they don’t cure the disease. I have Endometriosis, for example, which is a chronic illness and chronic pain condition. It cannot be cured by having a full hysterectomy, and not all people living with endometriosis are infertile and should just have a hysterectomy anyway to see if it will help, contrary to popular, yet outdated, beliefs! Lavender and peppermint oil can help with my pain, but they don’t stop my pain from returning and they don’t stop endometriosis from ruining my organs. Hot bathes and heating pads can help to ease the tightness in your muscles that are constantly contracted in pain, but they can also cause first degree burns if they are too hot and used for too long. Yoga may help someone with a mild case of endo, but someone with stage four or five endometriosis most likely will not be able to do some of these yoga routines because of the damage done to their organs by their illness, because of the pain that comes from stretching lesions that grow in the spaces between your vital organs and bond them together. A lot of these “cures” are not only not cures, they are also capable of causing more damage.
Chronic illness’ and chronic pain conditions are chronic because they cannot be cured. That’s the whole idea. Think HIV, diabetes, arthritis. They are not curable. You can treat the symptoms such as pain and fatigue to some extent, but they will return, because the illness causing them isn’t going anywhere. It’s like covering a wound with a bandage and saying that the wound is gone. There is no readily available procedure or treatment to rid them of this condition. This is a life sentence. People with chronic illness’ and chronic pain know this, they have either come to terms with it or are trying to come to terms with it. It’s a hard pill for them to swallow without you recommending they try some new pill your aunt shared an article about on the internet. Unless of course you are a doctor, or the person in question has asked for your input.
I have a problem with the notion that sick people need to be encouraged to help themselves. We are inclined to help ourselves! I have researched, sought out different doctors, meditated, fundraised and continue to advocate for a cure for my chronic illness’. I have come up with regimes, planned out my meals, and come up with flow charts of all the different ways I could help to ease my pain. I have tried to help the other people suffering around me as well. I have organized and hosted support groups. I have started to write a book about one of my conditions and have interviewed over sixty people in the last year alone who live with chronic pain. I have yet to meet one person that hasn’t tried peppermint oil, hot baths, and yoga to help their pain. Not one.
I have seen nineteen different doctors in the span of two years and two months, in two different countries, for three different conditions. I have tried three different types of treatment by oral medication, two different injections, and two different medical implants. I have tried naturopathic remedies, the herbs, crystals, and oils. I have tried Advil, Tylenol, Motrin, Aleve, naproxen, codeine, co-codamol, Percocet, tramadol, cortisone, and morphine. I have taken hot salt water bathes while being pricked by needles and then toweled off to try electro-shock therapy. This is a common story for someone living with an incurable disease.
I am constantly seeking out new treatments and trials of treatments to ease my constant, mind numbing, stomach curdling pain. I am my own biggest advocate, and the biggest advocate for everyone else suffering with chronic pain as well. I am an advocate for naturopathy, for western medical intervention, for Chinese medicine, for yoga and meditation. I am an advocate for anything that helps to ease chronic pain, because it has the full capability of ruining your entire life. I believe that everyone who suffers with chronic illness’ needs to advocate for themselves, and for others going through the same things that they are.
I spend my time off writing articles, like this one, to help people know they are not alone. Interviewing people about their stories, their experiences, and their struggles with chronic pain to share the stories they don’t know how to share. To give them a voice. I run a podcast all about health, chronic pain, and the struggles that different groups of women face every day. I am consistently fighting the good fight for people suffering like I am. For people who don’t feel like they can advocate for themselves, or that need someone to stand with them in solidarity. I don’t think that I am fantastic, because I know dozens of other people who spend their lives doing the same things every single day. In fact, I know very few sick people who aren’t doing something to advocate for themselves.
People with chronic illness are constantly trying new ways to help themselves and those around them that are struggling with their health. We are not perfect, we need help, support, and empathy. We are broken in a way that we understand. In a way that we try to soothe but know we can never fix. There’s a certain type of melancholy that comes with knowing that pain will linger for the rest of your life, but still choosing to live that life everyday. That is the reality of chronic illness, and sometimes it seems that we are the only people who understand this. Like everyone around us is in denial that this is our reality.
So again, I thank you endlessly for your suggestions of the way that your sister’s niece’s babysitter’s neighbour’s best friend’s mum cured her (insert your chronic illness here) and if I haven’t tried it, I will as soon as I get home. I will try it under the condition that you try to remember that people with chronic illness and chronic pain conditions are not lazy, we are not feeling sorry for ourselves, and we are trying, by every means necessary, to help ourselves, but chronic means chronic.
Thank you.
With love,
A girl with endless pain and determination to help herself (and those around her)
Thank you Devon for being our first guest blogger! You can check out Devon's facebook group "Tough Girls Club" and she has an amazing podcast that I will link below. Make sure you stay tuned on my IG page for our limited edition design collaboration!!!!