For most of my adult life, I have led a compartmented lifestyle. My illness was like a terrible skeleton I had to stuff into a closet and lock away, never to speak of again (or at least not publically). Part of this response, I think, was driven by attitudes of medical professionals. But, I also dug a deep hole for myself by thinking I could manage everything on my own, without changing my lifestyle. I paid the price for my silence, though. My struggle stripped me of my identity, my self-respect, and my voice.
That’s when I started blogging. Looking back now, it is the most important decision I have made with regards to how I live with my illness. Growing up in the ’90s, we all had Angelfire sites and Livejournal blogs, which is probably why I turned to the net as an avenue for coping. Besides my obsession with TMNT and YA fiction, my Tumblr account slowly started sporting graphics aimed towards the chronic community and before I knew it, I was sending emails all over the world. This powerfully positive experience leads me to believe that more chronic illness experiences need to be shared for three reasons:
- Self-Care, People! – The power of writing and sharing can be an enormously restorative practice.
- Building Support – Connecting with others and forming your support ring is key to living with your illness, rather than suffering through it.
- Fight for Your Rights – Illness needs a voice! Stereotypes keep us from sharing vital information that could lead to increased awareness and public action.
I’m by no means saying that this is easy. Talking openly about my illness has no doubt changed how some people perceive me. The positive and reaffirming conversations I’ve had, though, far outweigh the negatives. And, don’t think that this information isn’t beneficial to healthy people; no matter if you’re a friend, partner, caregiver, or a member of the medical profession, everyone can take something away from this post!
Not only is September Suicide Prevention month, but it is also Arnold Chiari Malformation Awareness Month! Speak up and join the conversation on social media!
Read on to see how you can start blogging and making a difference!
The day I received a diagnosis was so powerful that I cried during the examination. I had spent years going to doctors who accused me of everything from exaggerating my pain to lying for opiates. I had professionals tell me that science would never catch up and that I should seek out a therapist to work through what was surely a mental illness. It took one MRI scan to find that I had a malformed brain; not crazy, not lying, not exaggerating.
The way I was treated only enforced the negative self-image that I was building. I started to believe they were right, slowly internalizing every word. If only someone had taken me by the hand and told me what I’m about to tell you: Don’t give up on yourself. Take ownership of your illness. One fantastic way to take care of yourself, both emotionally and mentally, is to start journaling. Not only did this help me see just how badly I was beating myself up, but it also gave me a creative outlet to channel my frustration through. The art I was able to share on Tumblr gave me the confidence to share my chronic experience with others. This one facet of blogging alone demonstrated the immense power that sharing can have.
If you’re looking to start a blog, I’d highly recommend taking a gander at the Chronic Illness Bloggers network. It provides a great way for spoonies to connect with others experiencing conditions across the spectrum. It’s also not a bad idea to see how others handle life, blogging, and illness. I will admit I jumped into blogging without doing a whole lot of research; now, I share great resources I find on Pinterest dedicated to turning myself into a stronger blogger.
And speaking of connecting with other bloggers, this format encourages others to reach out to you and share their story. I’ve built email relationships that have turned my early experiences into advice for others. I know what it’s like to battle doctors and insurance companies. I’ve been there, and simply having the ability to talk to others who are going through the same thing validates my journey and helps them form their own self-management plan.
Blogging also turned a spotlight on how different people manage similar symptoms. For instance, one tip I always share is to drink Gatorade. My current neurologist tells most of his patients that this miracle drink helps offset some side effects of crucial medications. This has saved me during more than one fibro flare. I’ve learned techniques from others for creating DIY rice warmers out of socks (look for my full tutorial later in the month!), for assembling strong toolkits, and for tips on how to talk to loved ones about my illness. My blog has absolutely opened up a two-way street that sees me through tough times; I’ve built a defacto support group that I can turn to anytime. Living in a small town makes this digital resource absolutely crucial to getting through my day.
Fight for Your Rights
We’ve all heard, I’m assuming, about the soaring price of the life-saving Epi Pen. Mylan has now vowed to make the drug affordable by offering a $300 coupon. However, for many even that is unaffordable. The only reason that any change at all is happening is the absolute rage that people voiced online and in letters to their representatives. What amazes me, though, is that the public at large responded; it wasn’t just parents that jumped to advocate for their children. Healthy people with healthy families have joined the mass effort to raise awareness about big pharma. My summary here leads up to my last reason more chronic illness sufferers need to be blogging: you have a right to be heard.
Finding cures and treatments takes time and more money than we can even imagine. The only way that happens is through donation and increased awareness. Take the ALS Ice Bucket Challenge; the director of the National ALS Association commented in an interview that it is, “important to remember there wasn’t actually a disaster that brought ALS to the public consciousness, but rather an independent viral sensation.” This amazing feat is what’s possible when people open up about illness, disability, and the right of every person to be well.
Having the courage to publically confront stereotypes and serious issues concerning our health care system turned me into a stronger person. Six years ago, I barely had the nerve to walk into a doctor’s office, let alone turn to the web to tell my story. Now, I’m locally advocating for chronic illness support groups (especially for younger people) and supporting city groups promoting health and wellness. Blogging has pushed me to become vocal in my community and to work with people I would never have met otherwise.
Don’t miss a single self-care post this month! I’ll be sharing tutorials, interviews, and practical ways to live with chronic illness. Make sure to subscribe by clicking the Follow button in the sidebar!
Question of the week: what has been the best piece of advice you’ve ever received? I’m curious! Jump on Twitter and join the #SelfCareSept chat! As always, if you have questions, advice, help – whatever! – just leave a note in the comments!