Blog

Month: October 2012

Today's #HAchat Topic: Facing Judgement as a Patient

Image credit: doug88888 on Flickr

When building relationships and coexisting with fellow humans in life – there is conflict, disagreement, and a divide between how you perceive yourself and how others perceive you. In this week’s Health Activist Tweetchat let’s focus on the latter.

 

We often find ourselves having to speak out about what is true about ourselves, our health, and the communities we advocate for. This is because there is a lack of awareness, understanding, or compassion amongst the general public. Have you ever been told that “At least you don’t have [___ condition]” or that “You’re lucky you’ve got a good disease”? Have you ever been judged for seeking certain treatments or advocating for a certain cause? What about facing stigma for misperceived causes for your symptoms? Have you ever been blamed or felt another condition was blamed because of incorrect information or myths?

 

Health Activists from all different health communities have told us: people who don’t understand often judge. If the public thinks you’ve made “bad” choices and chooses to link those to your health – there can be some seriously painful judgement to deal with. No one would choose to live with a taxing chronic condition or life-threatening illness – and yet, because of myths, stereotypes, and lies – fellow patients are judged for their health. (Two examples are: people who have Type 2 Diabetes brought it on themselves (false) or that people living with lung cancer  brought their disease upon themselves by smoking (false! Many people with lung cancer never smoked).) If you don’t fit into the perceived ideal (which is often fabricated and exaggerated) – you’re invisible or “wrong.”

 

Even worse than that? That there is an implication that patients somehow “deserve” what they deal with. That there is some fantastical, cruel karma that doles punishment and comeuppance for people’s past behaviors or beliefs. It’s simply not true. There are plenty of exceptions to each of these causation “rules” – and so many disease go without known causes or even what may increase risk factors. Just as there are no guaranteed “cures” – there is no catch-all explanation for why someone lives with a certain condition or symptoms. It’s always a complex combination of genetics and environment. Every person is different and every situation or experience is, too.

 

And yet – even though each one of us is unique, we all struggle, and we all deal with insecurity and personal pain — the way we, and fellow patients, are treated is not always with compassion or understanding. We’ve got work to do as Health Activists to keep unmasking the truth and correcting falsehoods.

 

Join today’s #HAchat to discuss all of these topics and more. If you’ve ever been judged for your appearance, your health, or some qualities about yourself — or know people that have — let’s discuss that today. Let’s delve into what is going on and how we can help.

 

We’ll be tweeting here: http://tweetchat.com/room/HAchat at 3pm ET and hope to see you there!

 

 

 

 

Guest Post: Why Me: Disease vs. Recovery

Image Credit: Michael of Scott on Flickr

When tough stuff arises in life – we are inclined to analyze it and try to make sense of the chaos. Almost instinctively, we wonder, “why is this happening to me?” And, often, the answer isn’t what we want it to be. But that doesn’t mean we can’t rewrite the answer over time. It takes a lot of healing, rewiring, and acceptance. This moving post by Courtney explains how she rewrote aspects to her story – just by rephrasing her experiences and reinterpreting events. Just by trying to look at things in a different way – we can change the way we see ourselves and the course of our lives. It’s not easy – and it takes time. But it’s possible. Thanks for sharing this with us, Courtney. –Amanda

 

 

Why Me: Disease vs. Recovery

by Courtney Rundell, BeePea

 

Disease asks:

Why (have all these bad things happened to) me?

 

1. I was an abused child.
My father was a violent sociopath alcoholic. He took my mother and I away from everyone we loved and moved us to the middle of Mexico, where we lived outside of a small fishing village. We rarely had visitors, so no one could see what was happening behind our walls.

I lived in constant fear and learned how to survive. I disassociated. I found ways to become numb.

2. I became an alcoholic.

I swore I’d never be an alcoholic like my dad. He drank from the second he woke up until he passed out everyday. His drinking was our problem. He was an alcoholic.

And then there I was, 24 and unable to stop drinking.

I was genetically predisposed and it was his fault. Alcohol was the only thing that brought me peace in my world and now that was being taken away, too.
It’s not fair that I have to do all this work just to not drink on a daily basis, when other people can have some beers and be fine. I can never drink again. People look at me like I’m a weirdo when I tell them I don’t drink. I’m damaged.

3. I went to a mental hospital.

I cried for 5 months, made a plan to kill myself and then was placed on a 72 hour hold. I was 7 years sober. Life was supposed to get better after I stopped drinking, not worse. My marriage fell apart. My life fell apart. I had to start over – again.

When I came back, people said that I wasn’t sober because I took psychiatric medications. The 12 step meetings that gave me peace were no longer safe. The people who saved me from my alcoholism judged me for my mental illness. I felt alone and misunderstood.

4. I have bipolar 1 disorder and PTSD.

PTSD was another gift from my childhood. Bipolar came from my mother’s side; alcoholism from my father’s.

I managed to get the worst genes from each of my parents. And they weren’t great in the first place.

5. I had postpartum psychosis.

I finally made the decision to have a baby after reversing the brainwashing of my childhood (I was systematically trained to never want children) and then I didn’t even get to enjoy it. I did everything right – my psychiatrist and therapist were with me every step of the way – and I still lost my sanity.

It scares me how fragile my sanity is and how hormones can absolutely throw me over the edge. The road back has been far too long. Maybe I’ll never be stable again or I’ll stabilize just in time for menopause.

Being a woman feels like another illness.

6. I’ve lost friends and family because of all of the above.

At 7 months pregnant, my sister disowned me and two of my three closest friends turned on me. I crashed my car and had a hard time getting rides to my 12 step meetings, after I’d been of service to so many of those women for years. I finally got brave enough to ask for help and I was denied.


And these are only the top six. I’ve also been raped, molested and bullied. I’ve attempted suicide. I had a very sad miscarriage. I’ve watched people I love die and people I despise thrive.

These things have set me back time and time again. I’ve been given an unfair set of circumstances. Somedays I just want to give up and give in to the crushing weight of my life.


Recovery asks:

Why (were these opportunities for growth given to) me?

1. I was an abused child.

I been given the opportunity to break the chain of family violence. I am a mother and I’m raising my son with a loving husband in a non-violent home. Domestic violence is cyclical. I have enough humility to know that my instincts can be way off base, so I do the work to be the best mother and wife I can be.

There are three rules in my house: no hitting, no yelling, no name-calling. Today, my home is a safe place. My home is a refuge. My home is filled with love.

By living the life I do today, I’ve been able to help many young women accept and move on from their dark pasts. Ends up I wasn’t the only kid growing up in the chaos and confusion of abuse. I’m not alone and what was once a liability has become one of my greatest assets.

2. I am a recovering alcoholic.

I’ve been sober for 14 years. Drinking brought me to my knees and gave me the desperation to admit that my way of living wasn’t working. I was led to the 12 steps, a fellowship and most importantly a God of my own understanding to turn to in times of trouble.

 

When brought to our knees, why not pray? I was down there anyway…

And I’ve been given the gift of being able to help so many people with only my experience. No degrees, no resume, no ego needed – just my story.

I can go to a bar right now. I choose not to drink on a daily basis. I have choices today because I am sober and no longer a slave to alcohol.

Drinking is not my solution today and I get to do the work to not only stay abstinent, but live a happy, healthy life.

3. I was hospitalized because I had a plan to kill myself.

Mental illness brought me to my knees as well. In that hospital, I finally got the correct diagnosis. I was misdiagnosed with anxiety disorder more than once and I felt hopeless when the therapy and medication didn’t work. My illnesses are progressive in nature, so as they worsened, I feared that life would only get worse and worse until I could no longer bear the pain.

When the student is ready, the teacher will appear and that’s exactly what happened. I was led to the therapist and psychiatrist who have been on this path with me for 7 years now. I have a safety net of qualified doctors who I trust and can call anytime, anywhere. I have a solution to my problem today.

Being hospitalized is a humbling reminder of where I can end up again if I stop treatment.

There are still people who believe I’m not sober because of my meds, but they don’t stop me from going to meetings and speaking my truth. I’ve become a voice for people with co-occurring disorders and am working on a survival guide and a YouTube series. I can choose to be a victim or make the change I want to see.

I know my truth today so ignorance doesn’t affect me the way it did in the past, not that it doesn’t sting sometimes, but my truth is deeply rooted within me and therefore unwavering.

4. I have bipolar 1 disorder and PTSD.

I had to know the problem before I could be led to the solution. The work I have to do to live actually sets me free. The medication I take gives me a safety net to do the work.

The soul-searching wasn’t and isn’t easy, but living in my disease was far more difficult. I continue to learn how to live and thrive with mental illness and alcoholism. By lifting myself up, I get to help many others get back on their feet as well.

5. I had postpartum psychosis.

I outed myself on Facebook during a psychotic break, which led to my first blog post about mental illness. In less than a year, I’ve become an active voice in my community and continue to heal and help others.

I learn on a daily basis how to put myself first and care for my son. I remind myself of the oxygen mask theory, so much so that it’s become a mantra. I must take care of myself first so I can take care of my child.

I’ve also stopped comparing myself to other moms and hanging out with moms who are caught up in perfectionism.

 

My son is in full-time daycare. I let my husband do a lot of the work. Our son is truly co-parented. It takes a village and I love my village.

And menopause? I’ve met some amazing people on this journey who research mental illness and hormones. I have resources today and am learning about how best to handle menopause when it happens. By the time it hits, I’ll be armed and ready!

6. People judge me & they’ll keep on judging me!

What others think of me is none of my business so I stay out of it.

I found out who my true friends were once my mental health started to deteriorate a few weeks into my pregnancy. If my fair-weather friends didn’t show me their true colors, I wouldn’t have stepped out of my comfort zone and sought new, healthier relationships. My life is full of beautiful supportive people today and I couldn’t be more grateful.

See, “bad” is a perception. When I label something as “bad” or “good” I’m placing a judgement on it. Some of the most painful events of my life have ended up bringing me joy and freedom I never knew possible.

When I’m in it, I can’t see it. I’ve been foolish in this manner several times because I have to process, grieve and feel the feelings or I’ll never be free of them. That’s what I did when I drank – I numbed it out – I made the problem go away. Then in sobriety, I made the problem go away with too much solution!

In the big, huge picture, it all makes sense to me, but I live in the real world and get caught between the disease and recovery more often than I’d care to admit.

 

I’d be lying if I told you that I walk around in a constant state of gratitude.

 

Through daily prayer and meditation, I’m able to clear away the disease that stands in the way if me and my higher self. But it’s all a choice – do I choose to be a victim or a work-in-progress?

 

So instead of asking “why me,” why not ask “why not me?”

Because the final question I ask myself is always “how free do I want to be?”

And the answer is always “as much as humanly possible, thank you very much!”

 

 

Courtney Rundell – Freelance Blogger for WebMD, International Bipolar Foundation and the North Hollywood Patch. Thriving. Growing. Blooming. Bipolar. On Twitter @courtneyrundell and blogging at BeePea.com.

 


 

This week's #HAchat panel: Planning for End of Life

 

We have another Tough Stuff topic to discuss this week – that is relevant to both the patient community and individuals with significant online footprints. We’ll be discussing planning for end of life.

 

Now, for the most part – we don’t discuss EOL or death. We’re more focused on living well and making the most of each day. And that’s ok. Life is complicated enough with balancing life as a patient, friend, family member, parent, employee, and online health leader. You’ve got a lot going on – and stopping to think about the big “what ifs” can be scary and even counterproductive at times.

 

But, in light of Tough Stuff Month – and our roles as Health Activists – let’s go there this week. For the sake of conversation let’s delve into those topics we may have considered briefly or even dealt with personally. This week’s #HAchat panel will go into topics like:

  • Do you discuss End of Life in your health community?
  • If something happened to you – what would you do with your blog, online presences, and social profiles?
  • Do you have a living will? If yes – what advice do you have for others in creating one?
  • After some people pass on – their social profiles are used as memorial sites. Is that something you support? Why or why not?
  • Do you have a plan for your passwords, log-ins, or other information – just in case?
  • Would you consider telling your community if something took a turn for the worst with your health?
  • What aspects of EOL care can translate online? What cannot?

And more.

 

We hope you’ll join us in this open discussion about End of Life planning. No matter what health community you lead – EOL is something we could all face, suddenly, without warning. We don’t have to dwell on the existential fear and pain of death – but let’s have a conversation about it just to see what we can learn from each other.

 

Join us at 3pm ET tomorrow – Tuesday, October 23rd. We’ll be tweeting here http://tweetchat.com/room/HAchat#

 

 

Guest Post: My Beautiful Career

In this post, Health Activist Jane Waterman chronicles her experiences with the depths of depression and living with invisible illness while pursuing ambitious career dreams. Her struggles are difficult to read but relatable to those who have lived with unresolved symptoms and painful side-effects.  Though her journey was not easy, it is a testament to the process of healing and the work that goes into maintaining hope and finding solace. Thanks Jane, for bravely sharing your story with us. –Amanda

 

My Beautiful Career

By Jane Waterman

[Trigger Warnings: depression, self-injury, suicidal ideation]

 

I was not yet out of undergraduate school when I was visited by the first of many invisible illnesses. An introverted and isolated girl, I completed my honours degree in Physics in 1988. With a dream of becoming an astrophysicist, a PhD was the next logical step. However, beset by major depression, I knew I wasn’t ready for the challenge. It was time to enter the “real world”.

 

In 1990, I was training to be a meteorologist, a side-step from my envisioned beautiful career, and newly married to my first boyfriend. At a mid-year celebration, I contracted food poisoning and spent the rest of the year wracked by nausea and abdominal pain. After the requisite diagnostic tests deemed my health “normal”, the GP sent me to the psychiatrist.

 

I finished the training, but was unable to work due to my physical and mental distress. In 1991, two young men I knew committed suicide within months: one had chronic fatigue syndrome; the other, depression. My decline started in earnest. I began years of drug treatments for depression (my physical maladies were dismissed as something I’d have to learn to live with). In hindsight, the regimens of increasing dosages, switches, and combinations of psychiatric medications led to side effects that exacerbated my illnesses.

 

Even though I secured a dream job as a support scientist in 1992, I felt broken, and isolated myself from family and friends. Over the next couple of years I survived a drug overdose, had brief hospitalizations and was dismissed for more drug therapy. My new marriage fell apart. I felt consumed by inner rage. Whenever it leaked out I controlled it by directing it at myself. I began to scratch my arm with a blade. I didn’t know what self-harm was. All I knew was the feeling of immediate relief from the pain locked in my brain and body. It was the only way to ease the tempest: ironically, to help me pass as “normal”.

 

In 1994, an online friend introduced me to cognitive therapy and a good therapist in town. My new psychologist talked to me. He gave me the tools to return from the edge of madness. Through years of intense loneliness, and chronic fatigue from my undiagnosed physical illness, I felt someone believed me enough to want healing for me.

 

I loved my job in computer modelling, but despite my achievements I was plagued by worthlessness. Lacking self-trust, I checked my work for mistakes repeatedly, likely due to an undiagnosed obsessive-compulsive disorder. In bad flares of brain fog, my self-mistrust grew. The checking became paralyzing. It was difficult to finish things, and I kept checking things that were finished. I started getting passed over for promotions.

 

Emotionally, I felt raw around people at work – there were few others in my life. Some manipulated and exploited my illnesses. As someone who’d always had trouble expressing emotions, sometimes I’d take unscheduled breaks and go for walks, just to cry where no one could see me.

 

I spent more time at the local clinic and found a few locums sympathetic to my distress. One offered to write me a note for 2 weeks’ stress leave. Although I never took her up on it (workaholism being an ingrained family trait), I felt such gratitude to have been seen.

 

In 1997, I developed a relationship with a beautiful soul in Canada. I investigated transplanting my career and was accepted for a PhD in 1999. Through my marriage, I also became a parent to two teen girls. With the love of my new family, I hoped I could navigate graduate school at last.

 

After changing countries and leaving friends, grad school was exciting and terrifying. In my first semester, a bully on faculty seemed to delight in giving me failing grades, and then after more hours of work, giving me the grades I deserved. Grad school fed into all my fears of imperfection. My compulsive checking worsened, and my supervisor would at turns praise me highly and then question my lack of progress.

 

After researching my symptoms, I suspected I had lupus and asked to see a rheumatologist. In June 2002, he diagnosed me with Sjogren’s syndrome and started me on Plaquenil. What should have helped me merely led to more side-effects. I became suicidal. The self-harm that had been mostly controlled, re-emerged. I compensated by indulging my OCD tendencies and cleaned our home for hours each day, often at the expense of my school work.

 

I had a name for my illness, 12 years after it emerged, but after years of trying alternatives to Plaquenil, I found none that were effective or I could tolerate. By 2005, wracked with doubts and exhausted, I left my beautiful career on disability. I knew the stress of applying for disability benefits would finish me.

 

Over the years, I’ve done a lot of healing work, but skirted the roots of my illnesses. I found an amazing counsellor in 2010, who taught me about metta (loving-kindness), and mindfulness-based techniques. I began to receive the messages my wife had given me for years: that I was lovable and could love myself. It takes time to erase old tapes, but I’m giving myself that time.

 

Now, in 2012, I’ve begun my next beautiful career: writing and advocacy. Although I still have difficulty facing the world, I’ve found power in words. I now believe it’s not only okay to talk about it, it’s important to let others, including my younger self, know the compassion of sharing: of being heard and believed.

 

Even with exhaustion and pain, I’m grateful to have times like this when I can sit and share my message. You’ll make it. You’ll find things you are passionate about. You’ll make mistakes. You can forgive yourself and go on. There are beautiful things on the other side, and even if you end up where you didn’t think you’d be, you’re in exactly the right place.

 

Blessings,

Jane

 

Jane is a blogger, artist and advocate at Blackbird at Night (http://blackbirdatnight.com). Jane grew up in Australia, before joining the love of her life in Canada in 1999. At 46, Jane has lived through and with many challenges including depression, dissociation, Sjogren’s syndrome, endometriosis and PCOS. These challenges have necessitated several reinventions. When not eking out her time and energy as a freelance technical writer, Jane chips away at her dreams of being a “real” writer of novels and inspirational self-help books.

email: jane@blackbirdatnight.com

Twitter: @JaneWaterman

Facebook: www.facebook.com/BlackbirdAtNight

 

 

Join National Health Blog Post Month 2012

It’s that time again: the last burst of advocacy before we start a whole new year of Health Activism. That’s why we are doing National Health Blog Post Month (#NHBPM) this November.  We love to encourage the health bloggers among  us because, while a lot of people have blogs – it’s pretty special that you dedicate yours to raising awareness and helping others.

 

So join us in posting every day in November! But don’t worry – we have dozens of prompts to get you going. All you have to do is what you do best: write creatively about health.

 

This year we will be featuring a health blog a day here on the WEGO Health blog to highlight all of the folks participating and show the range of health blogs and the bloggers who write them. Want to have your blog featured? Just check the box on the sign up page and give us a quote about why you blog or what makes your blog special.

 

We will start of Day 1 on Thursday, November 1st – so be sure to sign up early to get the prompts now and start planning, if that’s your style. We love when everyone involved writes about the same thing but we also wanted to give lots of options so this years prompts are divided into two prompts a day. Choose the first option OR the second option and start writing. We’ve also included bonus prompts that you can use throughout the month or save for later. Of course, feel free to use the prompts as suggestions and make this NHBPM your own.

 

Once you sign up, head over to the NHBPM Facebook Event to RSVP  and tell the group a bit about yourself: your blogs name, what condition or health area you focus on, and a URL. The group will be the HQ for NHBPM all month long. So feel free to post a link to your newest post every day and interact with other participants by reading their posts and leaving comments. As bloggers we love comments so let’s a foster a mini NHBPM community there.

 

The only thing left to say is: have fun! You have two Get Out Of Post free days so you can use those if you need. Once you complete the challenge you’ll get a NBBPM blog badge and pride  in the awesome accomplishment of having blogged every day for a month.

 

We looks forward to your posts!

 

Sign up for National Health Blog Post Month here and you’ll get the prompts and 30 blog images to use if you want.

 

 

 

Ready To Learn More About WEGO Health?

I’m ready to work with a Patient Leader

Send this to friend