People Who Are Dealing with the Same Crap You Are Dealing With (Blogs):
The Bloggess (Jenny Lawson) [Depression; GAD; Rheumatoid Arthritis; etc.]: “Pain is real, whether it’s from depression or anxiety or arthritis or one of the many invisible illnesses that don’t easily show themselves but still exist and have to be treated, and – more importantly – have to be believed in order to be treated. You need to know that your struggle is a real one. You need to know that your fight is real and your survival is something to be proud of.”
Behind These Hazel Eyes: Bipolar Life with Hazel Hillboro (Hazel Hillboro) [Bipolar]: “Lesson learned by me in this episode: therapists try really weird stuff to get their points across. Lesson learned by my therapist in this episode: don’t try to out-metaphor a literature teacher.” “What kind of meds have you been on?” she asked. “All of them,” I answered. “I don’t remember them all. Name one. I’ve probably been on it.”
But You Don’t Look Sick [Chronic Illness; Invisible Disability] “The mission of ButYouDontLookSick.com is to help everyone with a chronic illness or invisible disability, in order for them to live their lives to the fullest and not feel isolated and alone. We believe that our medical circumstances have put us in a unique and understanding position, so that we can help each other through similar difficult times. We hope the information and community on our site can aid people in leading better lives through knowledge, networking, friendship and most of all support.”
Chickydoodles (Christine) [Child Loss; Stillborn Child; Grief; Pregnancy after Loss]: “But, at least with me, people can stop searching for the reason Matthew died. There isn’t one I’ll ever accept anyway…I believe that NOT everything happens for a reason. Sometimes life just sucks. And then you try to deal with the aftermath as best you can.”
Dis Ease Diary (Bruce Kramer) [ALS]: “When your life is framed by dis ease, the decisions about what you can handle, what you can take, what adds meaning and what subtracts life force take on significance that makes the day to day existence of ALS seem like a vacation.” “What if they forget how to remember my love for them? … I just want them to deeply know how much I love them and how much my life was bettered by being in their presence. I want them to know how healthy I feel in spite of ALS. I want them to know that because of them, I knew grace.”
Getting the Words Wrong (Meghan Ewald) [Cancer]: “Surgery day went as surgery days do. The morning of surgery I was under caffeinated and full of nerves. It isn’t pain that gets me. Once I’m in it, I can handle pain. The anticipation of pain is my undoing.” “Except this isn’t a novel or a movie. This isn’t the part in the story where the cancer patient hears the voice of God and everything is magically okay. This is real life. This is my life. No one spoke to me, and I don’t know if I’m going to be okay. And I am still so tired of cancer hurting me.”
Hyperbole and a Half (Allie Brosh) [Depression] “I tried to force myself to not be sad…But trying to use willpower to overcome the apathetic sort of sadness that accompanies depression is like a person with no arms trying to punch themselves until their hands grow back. A fundamental component of the plan is missing and it isn’t going to work.”
Hypothyroid Mom (Dana Trentini) [Thyroid Disease]: “One thought that has repeatedly struck me is how much easier my journey might have been if somehow, magically, some of the things I know now I could have known when I was first diagnosed with hypothyroidism, or when my body first whispered a warning to me that something was wrong. Instead, I had to learn those things the hard way. I hope that by sharing my story, my readers who suffer from this disease, and those who suspect they have it, might benefit from my experiences and what I have learned.”
Mast Attack [Mast Cell Activation Disorders (MCAD)] “What are mast cell activation disorders? They are a group of conditions in which the mast cells in the body do not function correctly. MCAD includes systemic mastocytosis, urticaria pigmentosa and mast cell activation syndrome, among other conditions. Mast cells are responsible for allergic responses. In MCAD, patients can have allergic type reactions to things they are not allergic to. These reactions can be very severe and even life threatening.”
Mast Cells & Collagen Behaving Badly: My Journey with Ehlers-Dalos Syndrome, M.E. & Mast Cell Disease [Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Disorders (MCAD), Myalgic Encephalomyelitis (M.E.)] “This blog was never intended to provide technical information on mast cell disease, Ehlers-Danlos, M.E. or Dysautonomia – there are other excellent blogs and websites out there that do that far better than I ever could. What it does aim to do is share the human cost of these diseases and how they impact day to day life.”
The Mental Illness Happy Hour (Paul Gilmartin) [Mental Illness; Trauma; Addiction]: “The Mental Illness Happy Hour is a weekly online podcast that interviews comedians, artists, friends, and the occasional doctor. Each episode explores mental illness, trauma, addiction and negative thinking.”
Well Fed (Melissa Joulwan) [Thyroid Disease] “Today is my Thyroidiversary, the 5-year anniversary of my thyroidectomy. On the upside, the thyroid nodules weren’t cancerous. YAY! On the downside, I’ve been on a rollicking medical adventure since then.”
Wil Wheaton (Wil Wheaton) [Depression; GAD] “And now it’s Friday, and Depression is telling me that I’m a failure because I didn’t finish the things that Depression helped ensure I didn’t start.”
Coming to Terms with Being Chronically Ill:
How to Deal With the Fact that Everyone Else Gets to Have a Life: “I didn’t realize what was happening at the time but I realize looking back that I had to grieve my former self. Slowly but surely, I went through layer after layer of a grieving process—anger and bitterness, bargaining with god, despair and hopelessness, acceptance, and back again. I don’t think the grief cycle ever really stops for those of us living with chronic illness, we just keep cycling back through the stages again and again.“
I Wish People Understood My Reality:
The Black Dog and Us: A Facebook community of people with mental health issues (Depression, Anxiety, Bipolar, etc.) and those who love them
Everything Doesn’t Happen For a Reason: An essay on grief. “When a person is devastated by grief, the last thing they need is advice. Their world has been shattered. This means that the act of inviting someone—anyone—into their world is an act of great risk. To try and fix or rationalize or wash away their pain only deepens their terror…Instead, the most powerful thing you can do is acknowledge…There is no greater act than acknowledgment. And acknowledgment requires no training, no special skills, no expertise. It only requires the willingness to be present with a wounded soul, and to stay present, as long as is necessary.”
Meditation vs. Medication: Facing Depression A graphic essay on depression by Deanna Zandt. “Never, ever again will I consider medication for my illness to be a weakness. I dig my chemically-induced force field, and the space it creates for me to practice being a healthy human who’s still on the planet.”
How to Understand Someone with Chronic Pain: A WikiHow page to help people understand chronic pain sufferers, with information on chronic pain, suggestions for how to be supportive, and suggestions for what to say (or not to say) to sufferers.
Migraine Virtual Reality: Excedrin (no endorsement implied or accepted) has created a virtual reality migraine simulator to help non-migraine-sufferers experience a portion of what it’s like to have a migraine. See videos here.
The Spoon Theory: Christine Miserandino’s explanation of what it’s like to live with a chronic, debilitating illness, The Spoon Theory helps significant others understand what it’s like.
Stupid Phrases for People in Crisis: A blog post about how not to wound people who are undergoing very challenging times in their lives. It is written from a Christian perspective, but even non-devout individuals sometimes utter some of these same phrases.
Giving Grace to People in Crisis – The Sequel to Stupid Phrases for People in Crisis: When people ask how they can help, you might want to share this blog post with them. (also written from a Christian perspective, but full of practical suggestions that anyone could implement)
Cool Tools:
An Open Note to the ACOG (American Congress of Obstetricians and Gynecologists): Information on stillbirth that can help you do research and have an informed conversation with your (or your partner’s) OB/GYN
Everything is Awful and I’m Not Okay: Questions to Ask Before Giving Up: A printable with questions that lead to possible actions that might help you hang on one more day
Paul Sufka, M.D.: Dr. Sufka is a rheumatologist. He blogs about medical education and technology. If you are a quant/tech geek, check out his blog for cool health apps, etc.