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!
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
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.
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.
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?
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#
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.
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.
We have an interesting post today that is perfectly timed in light of all the political debate coverage of the past few weeks. Politics and religion – two topics that definitely fall under the Tough Stuff Umbrella. We would like to thank Sara for bringing this topic to the forefront and sharing why she does what she does as a Health Activist. It’s a great reminder that we all have our own backstories, our own experiences, and our own beliefs that inform our lives and the decisions we make. They are as intricate and inexplicable as anything – and yet, so deeply personal and thus: controversial. Sara’s post reminds us that we can all be different and have our own views and still aim at the same awesome goals of advocating and helping others. –Amanda
On Politics, Religion, & Advocacy
by Sara Nicastro, Moments of Wonderful
The community at WEGO Health has designated October as Tough Stuff Month. In honor of that, I am sharing about some of the uncomfortable topics I deal with as a health activist in the diabetes online community, dealing with the topics of politics and religion.
We’ve all heard or been told the old phrase about how friends should never discuss politics or religion. That is a tough adage to follow when there are news stories about parents causing the death of their children by denying insulin and waiting for a faith healing. It is hard to follow while we are in the midst of an election process that seems to be focused on topic of health care coverage.
I was not diagnosed with diabetes until my last year of college, and so my political and religious views had already been largely formed. Adding a chronic health condition certainly challenged those views. If I believe that God has a plan for everything and that He will make everything work together for good, does that include a chronic health condition that can cause life-altering complications?
Using a term coined by a fellow diabetes advocate, I have come to believe in God and seatbelts. A few years ago I was at a conference that covered, in part, the interaction of faith and health. The speaker wondered if sometimes we treat conditions with medications that could instead be treated by using some of the tenets of faith such as prayer or meditation. A few friends asked me after the session how I felt about the topic.
I proceeded to tell them that when I am anxious, stressed, nervous, or depressed, it often has a large effect on my blood glucose values – sometimes even more than most high carbohydrate foods. When I am experiencing those feelings of anxiousness or depression or am carrying too much stress, I often turn to God through prayer to help reframe and reevaluate my thoughts, feelings, and priorities. I also get my meter out to obtain a scientific measure of my blood sugar. If I need to, I plug that high blood glucose value into my pump and evaluate the need for insulin. And you know what often happens as a result of both of these actions – both together and when done separately? My blood sugar stabilizes. God and seatbelts.
It would be nice if my faith helped me to understand why I have a chronic illness, and I believe that someday it will. Right now, it helps me to be content with my current circumstances. It also provides the purpose for my advocacy.
My faith commands that I pursue justice for everyone as I treat them with love and kindness. I have encountered too many people who have been diagnosed with diabetes but have not received proper treatment or education. They feel lost, confused, and upset. I advocate for them because no one deserves to feel that way. I bring awareness to diabetes so that people everywhere, around the world and in my backyard, know the causes and symptoms of diabetes, differing treatment options, and sometimes most importantly the support available in person and online. They deserve that. That is advocacy. That is justice. That is true faith.
Don’t assume that because of my conservative political and religious beliefs that I am ill-informed or don’t believe in access to medical care for all people with diabetes. Don’t preach tolerance while dismissing anyone who has values that differ from your own. We may have different opinions on the best way to achieve our goals, but my beliefs are the very thing that inspires me to fight alongside you and to continue to advocate for the causes that affect people with diabetes.
This post explores a taboo subject of death. Through Ms Rants’ calm, thought-out perspective – thinking about death becomes less scary, less forbidden and feels “okay.” As a part of the human experience, death is a constant. In her post we see why discussions of death have a place in our world – not only in our families but in our health communities. We raise awareness, break down barriers, and expose what’s been hidden when it comes to our lives – why not think of death in the same way? Thanks for musing with us, Ms. Rants! –Amanda
Thinking and talking about death
by Ms. Rants
I think about death a lot. Well, maybe not a lot. I don’t know. “A lot” is one of those relative terms, and I have no idea how much anyone else ever thinks about death. It’s not something that’s considered “appropriate” to talk about.
When I was a kid and I’d be bored on my walk home from school, I’d sometimes have daydreams about some guy jumping out from behind a house and coming after me. In each daydream, I’d find some oh-so-clever way of escaping and getting help. In some of them I was also protecting my younger sister. Every time, I succeeded. So thinking about death, for me, is like that – sure it could happen one of these days, but I’m not usually thinking about causing it, just the possible responses to it.
Technically my illnesses are not fatal. My doctor says that they could shave a few years off my lifespan, but looking at my relatives, there’s a fair chance that, even with a shortened lifespan, I should still make it into my 80s, and probably even into my 90s, so that’s never worried me. Still, a few years back I had a rough spell for several months and I could feel the life draining away from me. I didn’t feel like I was dying immediately, but I could feel the years being cut off the end of my life. It was like someone had poked holes in me and my life was draining out, slowly but surely. I don’t know if that’s what was really happening, but that’s how it felt. I thought about death a lot at that point.
Sometimes I think about suicide. I’ve never considered actually committing suicide, but I have wondered what would happen if…. I’ve thought about the least painful way to do it. I’ve thought about who would find me. I’ve thought about the reactions of my family and friends. Considering the reactions of my loved ones has always been enough to make suicide a non-issue for me. I have to admit, though, that if they weren’t around it might be different.
There are times I wish I’d die. This is different from committing suicide because I wouldn’t intentionally take any action. And I suppose that in the long run, I don’t actually want to die. But sometimes, the pain is so intense or the burnout is so difficult that I just don’t feel that I can handle it anymore and death seems like a great way out. Eventually I think about how it would affect other people and I remember why I should live, but there are definitely times when living seems overrated and death seems like a peaceful solution.
Of course, like everyone else (I think), I think about the death of my loved ones. Sometimes I think about someone I love who has passed away, or someone I love who is approaching death. Sometimes I think about what I would do if someone close to me were to die and I can’t even begin to imagine how I would handle it. Sometimes I feel guilty for even thinking about their eventual death, but then I remember that death is natural, it’s a part of life, and there’s nothing wrong with thinking about it, despite society’s taboo. I feel even more guilty when I wish for the death of a loved one who has recently been suffering from a long, painful demise. She has lived a long (she calls 70-somethings “young”) and full life, and she herself has plainly stated that she would like to die now, instead of continuing this horrible decline. So again, I know that I should not feel guilty, and yet I do because I am as much a victim to society’s fear of death as everyone else.
Death is always there, always a possibility, always occurring, but no one talks about it, even when it’s imminent. Yes, it can be scary to confront our own mortality, but that certainly doesn’t help anyone. I didn’t love reviewing my parents’ wills and living wills with them, but if I should need that information one day, I’ll be glad to know what it is and where to find it. And if we knew that one of us was going to die sooner, shouldn’t we address it?
The thing is, we don’t always know when death is imminent. If we as a society can’t discuss death when we know it is approaching, how are we going to talk about it when it feels more abstract? And the answer is, we don’t talk about it. We avoid the conversation at all costs.
Personally, I do not believe in any sort of afterlife, but sometimes I wish that I did. I do not mind that when I die, it’s over, but sometimes I wish that loved ones who I’ve lost weren’t entirely gone. I wish they were looking down on me. There are so many different beliefs when it comes to the afterlife, but that doesn’t change an important fact: at some point, we all cease to live on this earth. Yes, every one of us will die. No exceptions.
So why can’t we talk about death?
Ms. Rants is a single 30-something living near Boston, MA. She enjoys ranting (often) and raving (sometimes) at her blog, Chronic Rants (www.chronicrants.com) She is a daughter, sister, aunt, niece, granddaughter, and friend. She’s had symptoms since a young age, and now 20 years later, she completely has a handle on her health. Some days. Sort of. Mostly. Ok, sometimes.
This is a beautiful post on the immensely difficult experience of dealing with depression amidst an autoimmune disease. Karen’s prose makes you feel like you’re beside her in the doctor’s office just wishing, willing the pain and anguish away . But though she struggles, her story is one of triumph and perseverance. Bringing awareness to the mind/body connection and how important it is to find the help that you need, I think you’ll be moved by this piece and should definitely share it with your community. Thank you so much for writing it and sharing it with us, Karen. –Amanda
Making it Stop by Making it Through
by Karen Vasquez, of The Mighty Turtle
“When will this end?”
Years ago, I answered my question and have not looked back since. My answer is not one for everyone. My answer is for me. I’m sharing my answer because I am not the only person who has asked this question aloud, or alone curled in a ball on the bathroom floor.
While scleroderma changed my body, I believed accepting these changes was accepting defeat. I was scared of what would happen once I believed these changes were happening. What then? But the changes happened no matter what my beliefs. I fought acceptance. My brain answered this fight with depression. I stopped eating. I didn’t even realized I had stopped eating. I would feel hunger and allow myself to feel it and push it aside because it eventually went away. The hunger pains distracted me from my body and I learned to control them. That was pain I could set aside. Pain that I could stop. Pain I could control was just the fix a control freak like me thought I needed. It wasn’t until during a trip to the Museum of National History in Chicago, when I climbed on a scale fully clothed, saw the needle stop at 96 lbs and noticed a problem. But like my hunger pain, I pushed my weight problem aside.
That did not last. I couldn’t bend my wrists. My arms stopped swinging when I walked and my elbows remained bent. My once beautiful hands were replaced by curled up fists. I wanted to extend my fingers with ease and unconsciously talk with my hands. I longed to paint my fingernails a funky color and wiggle them in delight.
I had firmly rooted my view in denial and once I opened my eyes, it was so much to take in. I was overwhelmed. Eventually, I stopped leaving the house alone. I avoided friends and family. I missed baby showers, birthdays and holidays. I would go to the store with my ex-husband but remain in the car while he would shop. He knew I wasn’t eating. I wasn’t consciously starving myself, I would just take a few bites of a meal, play with my food a bit and then clear my plate when whoever was at the table finished eating. Eventually, my ex-husband would sit at the table until I would finish everything on my plate, but he could only do that one meal a day. At the time, he worked nights. While he was at work, I would try doing things around the house, but I would give in to pain and what I can only call sorrow. He often came home to find what used to be his wife curled up on the bed under the covers. A lump, illuminated by the television and beneath the covers and dancing lights my only thought was, “Please, make it stop.”
Little did I know at the time, I was making it stop by giving up. I don’t remember what got me in the car the day I drove myself to the psychology department at the San Diego Veteran’s Hospital. It was over 12 years ago. I had made that drive countless times from Temecula to La Jolla, it is all a blur. I just remember waiting to be seen, the feel of the hunger pains, feelings of madness and confusion, the walk from the elevator to the office window, the pattern on the chair cushions, a large screen TV with a chyron crawl that seemed so new to me. It was 2000. Don’t ask me what month. I was called back through the front window. A nurse met me and took me to a small room. I sat in chair while the nurse struggled to get a blood pressure cuff closed around my tiny arm. He weighed me and asked me if I felt faint. I remember carpet with maroon tones that was frayed when it met newly painted walls.
Back to the waiting room, chairs, TV, men sitting down and then leaving. There were no other females. Then I heard my name, “Mr. Vasquez?”
I got up slowly to an apology I had become accustomed to hearing. Being called “Mr” at the VA was a normal occurrence at that time. I was brought into a larger room with two psychiatrists. They explained to me there was a lot of walk-ins and apologized for not seeing me in an office. I looked around and saw what looked like some kind of classroom. I had been seated in a wooden chair next to a a table. One doctor next to me, the other on the other side of the table. In the middle of us on the table table lay my thick medical record and a clip board with a copy of a depression test I forgot I had taken while waiting.
One of the psychiatrists explained his job was to assess if I was a danger to myself or others. I knew the routine, I had done similar assessments in practice, but this time, I was the real patient. I was no client or student in a fishbowl exercise in psychology class. There was something wrong with my head and I felt it. The only way I know how describe it now is my head felt disconnected from my body because my body would not do what I wanted t to do.
I don’t remember the doctor’s first question. I just remember my reply, “Please make it stop.”
Then the conversation continued something like this:
“Do you want to hurt yourself or others, Karen?”
“Please, make it stop.”
“Do you think about dying?”
“Just make it stop, please.”
“Karen, do you want to die?”
“No, just make it stop.”
“Make what stop?”
“Scleroderma. Make it stop. Please make it stop.”
And then I felt a tug in the back of my throat and started sobbing. Between sobs, I sensed a conversation between the two doctors. I remember one handing me tissue while one left and returned with a woman. She placed her hand on my back and attempted to console me. I sensed more conversation. I tried to speak but there was no sound. I cried with no noise. The tug in the back of my throat turned into pain. Pain that I know so well I can feel it as I am typing these words. It felt like a hand was reaching up my throat and gripping the back of my tongue. I will never forget the pain or what I became. I tried to speak and nothing came out. I felt my voice with my body, but only silence came from my mouth. I felt rubbery, like I was turning inside out. I had become The Scream, like the painting.
I don’t know how long I sat or remember putting my hands over my eyes, but when I looked up, the doctors had gone. The woman remained. The feeling in my throat was gone. Then I found myself hugging a complete stranger. Once I let go of this poor woman from what was probably an awkward moment, she gave me some water and more tissue. I felt calm. I felt relief and I had no idea why. She gently guided me with her hand on my back me to her office using a route that avoided the waiting room. I was thankful for the privacy. She led me to a room with no windows, but plants. Plants that appeared to thrive under florescent lights and their willingness to thrive under those lights comforted me.
She had introduced herself to me as my counselor. I could finally understand what she was telling me. I don’t remember the exact words, I understand it to be this: I had become so overcome with grief from the loss of use of my hands from scleroderma, my brain was beginning to shut my body down. She told me I had major depression and severe anxiety. She made an appointment for counseling. The degrees on her wall told me she had a phD. I would be back to see her in two days. Then she brought me to the pharmacists office.
I had been to the pharmacy many times at this VA Hospital and met with pharmacists at a window before, but this pharmacist was different. I don’t remember his name. He was very tall and had dark black hair. His demeanor made me feel comfortable in his presence. He seemed excited I had my degree in psychology. I was sure why, because my knowledge compared to his education, I was like a second grader. He was a Pharmacologist with a phD in neuroscience. This was to be the first of our many meetings. He told me he would be following my progress closely.
I had assumed my depression was temporary, just like I had believed my scleroderma was. I had been told for years that scleroderma is a progressive disease and that my body would change. I heard the words, but I never believed them until I met this man with a messy desk and a working antique Mickey Mouse phone that seemed to float above the clutter.
His explanation went something like this, “Your brain has responded to the progression of scleroderma, and has started the process of shutting your body down. It’s probably why you no longer feel hungry.” He was right. I was no longer feeling hungry.
He continued, “Depression is not just a feeling, it is a physiological change in your brain and your brain has stopped producing a certain type of neurotransmitter. You will most likely need medication for the rest of your life. This is not your fault. It’s a natural reaction. You are 29 years old and you have been through more than most 50 year olds. If you did not have some kind of reaction, I would be worried, but I am going to keep my eye on your medication doses to make sure they are helping you.”
And watch me, he did. I remember spending more time in his office than my counselor’s. We talked about synapses and receptors. It was like being personally tutored about my own depression. For some reason, I was more interested in the physiological function than anything. It kept me talking to my counselor and over time, gave me a sense of empowerment. I had a truckload of issues to work out, but what I had learned from that day is that scleroderma might take me down, but depression would probably kill me first if I ever let it get so out of control again.
Now, twelve years later, I still take depression and anxiety medication. Based on my own experience through the years I do believe in the mind/body connection. When I have a bout with depression; my symptoms get worse, my pain tolerance is lower and my skin gets tighter. Depression with a chronic illness like scleroderma does not go away. Symptoms of depression come and go as the disease progresses. Because of the help I received that day I became The Scream, I have the ability to recognize unhealthy depression, anxiety behavior and symptoms so that I can get help when I need it. The day I became The Scream was not the last time I have been a Scream and I am sure I will have days like that to come. I don’t know what is to come, but since that day I have survived countless hospital stays, near death in childbirth; pulmonary fibrosis, sarcoidosis and rheumatoid arthritis diagnoses in addition to scleroderma and a divorce. All that in, addition to life’s normal transitions; like losing family members, changing jobs or losing one. Scleroderma is a part of my life, but it is not my life. It is not in my way, and it doesn’t pull me backward.
Of course I wish it away. I want all of it to stop, but there is no cure at this time and it is not going to stop. It’s okay to wish it away. It’s just not okay to ignore it or let scleroderma, sarcoidosis, rheumatoid arthritis or whatever your diagnosis consume you. If you are still reading this, I still wish I could do a Jedi Mind trick and make your illness and it’s symptoms stop, but no one can. I can tell you it’s going to be okay. Not because you are going to get better. It’s going to be okay because you, the reader, are going to take care of yourself, watch for signs of depression and get treatment when symptoms show up. Taking care of ourselves makes us powerful, and it is the only thing all humans have control over; chronic illness or not.
So I do my diagnostic tests and go to my doctor’s appointments. I take care of my health like it’s a full time job. My life depends on it.
This post is a difficult one to read. It chronicles an immensely difficult experience to go through and eventually write about. Thank you to Amy K for being so brave as to go there. Even though we know that sharing is the first step toward awareness and feeling less alone – that doesn’t make it any less challenging to do so. But when we can start by saying, “This is real and something that many experience in silence” – we make a difference. Each post like the following is a big step toward breaking that silence. Hearing first-hand accounts is invaluable. If we can begin to do to provide a safe space for people to speak openly about this and similar struggles, perhaps others can begin to seek healing. Thank you again for your courage, honesty, and openness, Amy – this is a beautiful, though heartbreaking, post. –Amanda
Learning to be Okay
by Amy K, Una Vita Bella
[TRIGGER WARNING: suicidal ideation, self-loathing, self-injury.]
Thinking about tough stuff when it comes to living with chronic illness does not produce a lack of ideas. If you are reading this, it’s likely you have had to deal with plenty of really tough circumstances, pain, and heartache. The one thing I know to be true is that all of us share the human experience of tough times. It’s one thing to go through them, but it is another, different thing to talk about them.
So often we want to disguise our pain, disguise our heartache, and just push through it to the other side. All too often we keep things inside, our feelings eating at us like a cancer, buried underneath the smiles we put on for as many people as we can. And most of the time, when we keep our mouths shut, it seems to serve us well (or at least better than the alternative). But in truth, doing that only hurts more people. As humans we need to know the struggles of our peers, our family members and our friends. We need to know so that we can help. And so, I will share with you.
My journey with health issues started at a young age, but it wasn’t until my 30th year that I seemed to reach some kind of pinnacle of pain, both physically and emotionally. I had endured a very difficult pregnancy (my 2nd)… months of nausea, vomiting, insomnia, severe depression and anxiety. My body was overwhelmed by the natural process of pregnancy; it was too much. Months after the birth of my second child I discovered I had developed the pain syndrome known as Fibromyalgia and my mental health declined rapidly. Having faced depression before, I should have known what I was at risk for. But I had not faced months of pain and illness previously. I was not prepared for that! The days and weeks turned into months without relief and, before I knew it, I lost all hope and zest for life. Life felt a burden. I felt as if I were a burden to everyone- a tell-tale sign that depression was getting the best of me. The downward spiral had already begun and my descent was rapid.
I was a young mother with two beautiful children, a nice home in suburbia, and great neighbors to boot- what could be so wrong? It was that thing called pain and illness and I waved my white flag as I surrendered in the sickest way, by attempting to take my own life. What ensued thereafter is the really tough part though. Because the easy part of this story is to tell you what I already have. The easy part is sharing how I got there and why my mental health went south. In fact, I share this part of the story often because I want people to be aware that suicide and suicide attempts are a real concern for people living with chronic pain and illness. What I don’t share is the struggle that I faced in order to come back from that, the messy parts, and the toughest parts to accept. This part of the story is one that I have not told before.
Things got worse before they got better. After my suicide attempt in August of 2006, I was bathing myself in shame and guilt for what I had done and for not being strong enough to get past the pain. I sat in hate and self-loathing. Also, I felt weak and small for being in this place. Weak, for being hospitalized for psychiatric treatment. Weak, for exposing my children to such pain. All of the feelings turned inward and I had nothing to do with them… Despite the work I was doing to process what had happened and the therapy I was going through, I found myself in a place that felt scarier to me than the hospital. I began to self-harm.
This is the toughest of all topics for me.
I believe I have only written about this once before, for this is the topic that carries the most shame and embarrassment with it. I don’t understand it completely. I find myself confounded when I try to explain how it happened, how it started. All I know is that for some reason hurting myself took me away from the other pain I was experiencing.
To tell you that I burned myself and cut myself with a razor blade and broken pieces of glass, is the most hideous of things for me to say. And yet, it is true. I hid in the bathroom at the hospital and at home. I snuck away at night or during times of intense stress and hurt myself. It was scary. To admit that I was capable of doing that is too much for me to stomach now, 6 years later. Somehow my pain and illness, along with previous trauma, led me to a place where that was my reality. And it wasn’t until I came to a realization that I could not harm myself any longer that the road to healing really began.
It was a slow process that began with a moment of great fear about what I had done to myself and a decision that I must stop. I realized I had to find ways to distract myself and I had to find ways to love myself again. While I was able to stop self-harming, it was an even longer process to stop self-loathing. It took months and years of practicing self-love and learning to be okay with who I am -even with mental health issues and fibromyalgia. Self-acceptance, even in spite of my body’s failures and my mind’s failures was the key. Now, I don’t so much see them as failures, but more as idiosyncrasies that make me unique. (Okay, sometimes I still see them as failures, but not most of the time!)
I want the world to know that self-harm is real. Awful, yes, but very real. It is not just a cry for attention, although attention is certainly needed. I want you to know this behavior can be found in adults, although it is most typical to occur with teenagers. I want people to be able to discuss this topic without immediately assuming that the person exhibiting this behavior has lost all control of their mental cognizance. My desire is for the world to see this behavior as another sign of pain, not illness. If you know someone who self-harms, self-harm yourself, or just want to learn more, there are resources available at 1.800.DONTCUT(366.8288) and at www.selfinjury.com.
Amy K is a Health Activist in the Mental Health and Chronic Pain communities – she has won numerous awards for Best Depression Blog and is the creator of the #MHSM (Mental Health Social Media) chat on Twitter. You can follow her work on her blog Una Vita Bella and on Twitter @abeeliever.
This is a wonderful post that speaks to an experience many of us go through — facing the decision to double-down and push through … or give up on a dream. When faced with a life-altering situation such as the diagnosis (and symptoms) of a chronic health condition – everything is effected. The path you thought you were on becomes a new journey with more uncertainty than ever before. Then there is mourning – the loss of your dreams, of the self you’ve come to know, of the life you’ve led. Sometimes this calls for some serious soul-searching. But then – new things can arise. You can find new strength within and new plans can manifest and there is space for new dreams. This guest post is by Lauren Erbach – a lovely Health Activist in the IBD community – who shares her story about her dream to complete a triathlon and her eventual decision to do what was best for herself and her body. She also shares tips for others of us wondering if a decision we’re making is the right one. Thanks for sharing with us, Lauren – and encouraging hope and self-reliance through the retelling of your own quest to do what was right for you. –Amanda
Giving Up On Dreams, Finding New Inspiration
by Lauren Erbach
I became a runner almost immediately after being diagnosed with Inflammatory Bowel Disease. For some reason, despite the blood loss, the anemia, emaciated body and new diagnosis, my disease didn’t strike me as serious at first. It was no different than chicken pox or strep throat. Okay, sure, I’ll take my medication and feel better. The thought that I couldn’t do something because of my disease simply didn’t occur to me, and I’m grateful for that naiveté. Not knowing just how bad it could get, or how much it could impact my running journey gave me the courage to start.
It started with a 5k. Then an 8k. A few half marathons. Several marathons. Before I knew it, I was deeply engrossed in the running community and surrounded by a group of incredibly athletic friends. They’re the kind of people who think training for an Ironman (a 2.4 mile swim followed by a 112 mile bike ride and a 26.2 mile run) is a lot of fun. The more I became one of them, the more just running marathons seemed insignificant. I decided I wanted the challenge of triathlon, but swore up and down I would only do a short distance race.
And then somehow, I found myself training for a half Ironman triathlon. Compared to my friends’ endeavors, this was a much smaller task: a 1.2 mile swim, 56 mile bike ride, and 13.1 mile run. It seemed like a big deal and a small feat at the same time. (I blame being surrounded by crazy athletic people.)
I selected a race. I forked over a whole bunch of money and signed up. Eight months before the race, I started training. I swam and biked and ran my little heart out. There were weeks where I was training over fourteen hours, waking up early to get in a workout before work, and bringing a bag with me so I could hit the gym again on the way home.
It was a lot, even for someone with a properly functioning immune system. It was too much for me.
A month before the big day, I was in my doctor’s office dealing with the biggest flare-up I have had since my diagnosis. It was time to go back on steroids. And despite my doctor’s reassurance that, “We can get you through this race if you really want it, Lauren.” I knew it was probably time to call it a day.
It was incredibly difficult, because there wasn’t one person who could understand it all. My doctor understood my medical condition and how to get my body back to normal. I don’t believe that he quite understood the stress that training for and racing 70.3 miles was putting on my body. My coach understood the demands of training and racing, but she did not understand my Crohn’s disease. So when it came down to it, I could ask lots of questions. I could consult with people I trusted. But I had to make the decision for myself.
I chose to quit.
It took months before I was comfortable saying that I quit. “I had to stop training,” was how I preferred to put it at the beginning.
But I did quit. I still believe it was the right thing to do. There are times in life where you feel like you are pushed to the max, but you’re not. Those are the times that you need to keep pushing. They’re the times that show you the incredible things that you’re capable of doing, if you put your mind to it.
There are also times where you need to be okay with stopping. I don’t know what would have happened if I pushed on and chose to race. Maybe I would have crossed the finish line with a smile on my face. Maybe I would have pushed myself too far past my limits in the remainder of my training and ended up in the hospital. I will never know. What I do know is that I gathered all the facts I could and made the best decision I could with the information I had.
I wish I could say that I made the decision calmly, with the clarity that I am now able to write about it. In reality, it was made over countless nights of agonizing, crying, and wondering why my body was attacking itself, when I just needed one more month of strength to get to the finish line. This was the first time my disease had stood in the way of a big goal, and I was a jumbled mess of anger, confusion, and sadness.
I am now more grateful for that experience with my disease than I am for any other. Suffering a loss like that due to my disease gave me the courage to start talking about it. What was a running and triathlon training journal turned into the blog of an athlete living with an autoimmune disease. I started wearing my “Ask Me About My Crohn’s disease” shirt everywhere. I began training with, and eventually working for, Team Challenge for Crohn’s & Colitis.
This setback turned activism into a part of my daily life. I even chronicled my decision to quit on my blog, in the hopes that others facing something similar could find comfort if they needed it.
So what should you do if you find yourself in a similar situation? Take your time. Allow yourself to feel sad, angry, frustrated, relieved – no emotion is bad – all are worth processing and acknowledging. Then, listen to your gut. Deep down, I knew it was time to allow my body to rest, but I wavered because of my pride. I worried about what other people would think, and I worried about letting myself down. It was a huge sense of relief when I finally gave in and did what I knew was right.
Best of all, it led me down an amazing path of self-discovery and activism, right to a dream job that I never knew I was dreaming about. You never know what lies ahead.
Lauren Erbach, 27, writes about her life as an endurance athlete with Crohn’s disease on her blog, Forward is a Pace. You can also find her on Facebook and Twitter. This post is based on one that originally appeared on Girls With Guts.
Today we have Guest Post on Stoptober and the challenge of quitting smoking — and how to approach it from the perspective of a loved one who wants to encourage someone in their life to quit. These are difficult conversations to have – but below are really great tips for starting the discussion and how you can help someone stop potentially destructive behavior. This isn’t a subject we’ve covered before so this is a great opportunity to learn more. It fits in really well with Tough Stuff Month. Thanks to James at Dr Ed for reaching out and sharing this post and infographic with our audience! –Amanda
Stoptober: Are you Tough Enough?
On 1st October, the UK government launched the first ever ‘mass quit’ smoking campaign. ‘Stoptober’ urges smokers to quit for the month of October, with the support of friends and family.
Our friends at WEGO Health thought Stoptober would be a great fit with Tough Stuff Month. So if you want to help a loved one to quit (or break any fear, addiction, or bad habit), here are our top tips on starting a difficult conversation, plus ways you can support a quitter, and a handy infographic on the latest smoking cessation treatments.
How to start a difficult conversation…
1. Don’t ambush, pick your moment
You need to pick the right time to broach this subject; it isn’t the sort of conversation to have when waiting for the bus, or on a night out with friends. Instead, choose a quiet time when you’re both relaxed. Try starting the conversation when you’re out walking together. You don’t have to maintain eye contact when walking, so it’s easier to get out all of the difficult things you need to say, but you can still hold hands – and provide that reassuring hand squeeze if and when they need it.
2. Don’t rehearse (too much!)
When building up to an important conversation, it’s so tempting to prepare and practice exactly what to say; but conversations never play out the way you planned them. You don’t want to nag or lecture and risk having your loved one clam up on you. You want to gain an understanding about how they feel about their smoking. So just say your bit and let them speak. Once you have this insight you can work out where to go from there, together.
3. Think about what they want
You know your loved one better than anyone. Are they stubborn? Do they react well to criticism? Or are they likely to feel attacked and become defensive? They may need time to reflect alone and in private so perhaps a written letter would work better? At least this way, you can get out exactly what you want to say without having them cut you off, or shut you down or letting your nerves get the better of you. They’re then free to talk to you when they’re ready. If not, just follow up with a simple ‘did you get my letter, what did you think?’
Now that you’re in it together, you need well informed advice about everything you can do to keep them resisting. Here are our top 10 tips:
- Keep them motivated: Many smokers say they would like to stop but don’t really want to. Make sure they are clear why they want to give up. It may be to save money, to improve health, or to protect their family. Really wanting to give up is the best way to quit
- Provide emotional support: They need people around them that will support them. As many people as possible! Get your partner to tell people that they are quitting. It could be the difference between stopping and starting again.
- Avoid ‘cold turkey’: As you can see from the infographic below, quitting cold turkey is the least effective way of quitting
- Use nicotine replacements or other medication: Every smoker is different, but cutting out nicotine completely is hard, so consider using some kind of nicotine replacement.
- Use cigarette shaped substitutes: Smoking is a physical and a psychological addiction. The feel of a cigarette in their hands may be as important as the nicotine itself. Try out plastic cigarettes, or e-cigarettes perhaps
- Use relaxation techniques: When cravings strike, suggest using relaxation exercises to help overcome the negative feelings. At the very least take deep breaths.
- Treat them: One of the immediate benefits of stopping smoking will be the amount of money saved. Make sure they spoil themselves with the money they’ve saved.
- Focus on the positive: Giving up smoking is one of the hardest things that anyone can do. Get your partner to write down lists of all the positive things that will be gained by stopping smoking. Constantly remind them of how many advantages there are to quitting
- Know the triggers for smoking: Know the situations when your partner smokes (e.g. after a meal) and help them to break the cycle.
- Fill the void: One of the most difficult things with cigarette craving and withdrawal symptoms strike is not having an activity to fill the void. Try chewing gum, eating something healthy, or calling a friend.
The best smoking cessation treatments [Infographic]…
Quitting smoking is tough, but if it’s tough stuff they’re made of, they’ll get there eventually – and you need to make sure that you’re there for them until they do!
Good luck! DrEd – Your Online Doctor