I’m going to share a hard story with you about what’s been going on behind the scenes. It’s a story of struggle, perservance, and slow triumph and it’s still in-progress. I’m breaking it into parts both for readability and so that I’ll start sharing it sooner rather than later.
On September 30th, 2011, our world got turned upside down. Angela (my wife) was on emotional overdrive and we couldn’t turn it off.
Of course, you’re probably wondering how we got there. In November of 2009, Angela was diagnosed with ulcerative colitis. Ulcerative colitis is a medical condition similar to the more known Crohn’s disease; the lower colon becomes inflammed and develops ulcers. It causes a lot of digestive abnormalities, which is bad enough, but given the taboo nature of the such things for women, it’s even worse.
People with ulcerative colitis (UC) have flare-ups as a reaction to food and/or stress. A UC flare-up disrupts digestive processes even more; whatever is eaten immediately comes out, unprocessed. One of the medical responses to flare-ups that don’t clear up on their own is to take prednisone. Prednisone is a steriod with a whole slew of side effects, one of which is anxiety and nervousness.
Throughout last September, Angela was dealing with a particularly bad flare-up and was on a long, high dose of prednisone and it triggered acute, debilitating anxiety, OCD, and depression. Relatively simple tasks like deciding what to eat for lunch paralyzed her, and then knowing she was paralyzed got her either obsessed with what was wrong with her or depressed that she was paralyzed. It didn’t help that she was getting 2-3 hours of sleep a night, at best.
It was hard to see my normally rock-steady wife lose herself. She’s the glue that holds so many things together, but she reached a point to where she couldn’t hold herself together. The day we released 2012’s planners, I came downstairs and found her crying and frustrated because she’d spent the last 7-10 minutes unable to decide between a turkey and ham sandwich.
After that, I called and got her into her doctor as soon as possible. I’d never seen her like this and it was getting worse – we needed help.
Time to Reset
The trouble with talking about mental illness is that it has such a stigma, despite how prevalent it is. Most of the words we have are so culturally and emotionally-charged that you end up either having to calm people down when you tell them about it or explain why you’re not freaked the hell out about what’s going on.
I say this because I’ve been very careful with the way I’ve talked and thought about everything that’s been going. “Breakdown” or “lost her mind” would be the words that most people would use to describe what happened to Angela, but neither resonate with us.
Angela needed to reset. We couldn’t turn the emotional and psychological maelstrom off, but what was going on wasn’t her.
She was prescribed some drugs I won’t mention by name lest we all get spammed to death. It was a tricky pharmaceutical dance: we had to take one medicine to fight the extreme anxiety, others in conjunction with that to get her to sleep, and, later, others to stabilize her moods and fight the background anxiety.
And we pulled her off the prednisone as quickly as we could. While consulting with her G/I doctor, it was determined that a) prednisone was off the list of drugs she could take and b) she may have been misprescribed it in the first place. Some of the symptoms of UC are the same as IBS, but since she was diagnosed with UC, it was presumed to be the culprit. It turns out that over-the-counter Immodium AD and de-stressing works better for her. (Doh!)
I spent a lot of time in October in and out of doctor’s offices and taking care of Angela. It wasn’t safe for her to drive, she needed someone to be with her, and she needed to rest. I didn’t have to be with her to keep her from intentionally hurting herself, but, rather, if I wasn’t around, she’d start trying to work on something. I’d run upstairs to get something, field a call from her parents who were understandably concerned and wanted to know what’s going on, and come downstairs to find her raking leaves or cleaning the kitchen.
Except she really wasn’t raking the leaves or cleaning the kitchen. She was overwhelmed by all the micro-decisions that come up when you do mundane tasks like that. Those micro-decisions were straws being placed on the camel’s back, which is exactly the opposite of what we were trying to do.
Anxiety, Depression, Obsessions, and … Suicide
The reset period was especially hard because it was akin to slamming on your brakes on the interstate. Angela has always been really active in one thing or the other and being pulled out of everything was hard. It’s hard for most of us to sit still anyway, but it’s especially hard when you’re battling anxiety and obsessive thoughts.
The way I came to understand the anxiety and obsessive thoughts were like she had a psychic claw dangling from her head. The claw grabbed whatever she placed her attention on and would not let go. One of our cats was sick with some kind of weird sneeze and Angela would worry about that for a few hours until the mail came and she saw the outside of a bill. The psychic claw would grab onto the bill and she’d worry about that for a few hours until she saw something in the kitchen that needed cleaning. The claw would then grab that. Round and round we went.
While I didn’t have to worry about Angela intentionally hurting herself, she was having reoccurring thoughts and obsessions about how much better off we’d all be if she were no longer around and we didn’t have to take care of her. At other times, she’d be thinking about ways she would kill herself if she were going to kill herself. Conversations like these are something I’d never wish someone to go through, either as the person having the thoughts or as the person hearing their beloved suggesting that they’d be better off with their partner dead. (Well after the more intense parts of the reset, Pam sent me the link to Out of the Darkness, a piece on the New York Times that struck really close to home – the name of this part is a tip o’ the hat to that piece.)
I participated in some of her earlier therapy sessions since I had to take her there, she felt more comfortable when I was with her, and because I wanted to make sure that Angela shared her suicidal ideations with her psychologist. Her psychologist let us know that what I just described was normal for what she was going through. The object of her obsessive thoughts didn’t matter and it didn’t even matter whether they were “real” issues, and, unfortunately, trying to rationalize them away only fed the obsessions. It was hard for us both not to try to rationalize and reason through things, given who we are. Suicidal ideations are also common for people struggling with depression, too, but it was good that we were talking about them and addressing them head on.
That rationality thing played out in another challenging and unexpected way since Angela has a PhD in Sociology with a specialization in family and mental health. She knew exactly what was going on with her and how she’d be expected to feel, but that actually made it worse. It’s like being able to see yourself falling but not being able to do anything about it at the same time that you feel everything that comes with falling.
Putting the Pieces Together While Waiting
A lot of October and early November was an intense waiting game; the meds had to kick in and get things stabilized, but an anxiety-obsession-depression spiral would throw us off for at least a day and sometimes several days. The mornings were hard because we’d have to work through so many counter-productive patterns and the nights were hard because we never knew how the next day would be. “One day at a time” is easy to say but incredibly hard to practice sometimes, especially when the days are so long.
Through all of this waiting, I started putting so many puzzle-pieces together in a way that made them all make sense. This was a long time a-coming – you’ll see how in the next part.
In case you’re curious, yes, Angela and I are both ready to share this publicly. We don’t want to perpetuate the trend of people not being able to talk about ulcerative colitis and mental illness, and, as a business leader, I don’t want to perpetuate the myth that entrepreneurship and small business is all unicorns and kittens. Sometimes it sucks AND some of the best lessons come from working through challenges. (Click to tweet – thanks)
Continue the story by reading “The Lead-Up to The Reset.”
Very courageous for you two to talk about this publicly. Thank you for helping to remove the stigma.
Big love to you both. That sounds like a really tough road. Thank you for sharing your journey and helping to educate people about the realities of mental illness. I hope it gives more people permission to seek ubuntu through the challenges of mental illness.
Much love to both of you. Thank you so much for sharing your story.
Oh, Charlie. Oh, Angela. Thank you for being so brave and so open. I feel so deeply for you both. I’m holding you both in my heart.
I am so proud of you both for sharing this personal journey with us. Just yesterday, I tweeted about the post Jenny Lawson (The Bloggess) wrote about her own journey with mental illness. Like she said so well in her post, we cheer for people who fight back from cancer and other “understandable” illnesses. For some reason, mental illnesses are not understood, and thus feared.I love you both so much, and I am so proud of how you have chosen to teach others that it is safe to share tough times, and that you can and will recover from challenge.
Here is Jenny’s post:
Long live courage.
Charlie and Angela, thank you for the courage to share your story. My mom had a debilitating mental illness throughout my teenage years. My dad was totally devoted to her. I often felt I fell to the wayside, but Charlie your words help me to understand the intense love my dad showed by being there for my mom.
It is wonderful to hear your love for her sustaining you both through the challenges you went through and are no doubt still going through. It’s also wonderful to hear that Angela was ready to help herself battle and overcome, as taking that step and feeling even more vulnerable is terrifying.
Peace, hope, and love for you both.
@ksburgess Thanks, Kristen, and Hi! I don’t believe we’ve met or that you’ve commented before, so thank you and welcome to the community.
We had a lot of love sustaining us through the darker periods of this. It was one of those times in which I was (usually) grateful that we’d built our own company that could support me being there, too – it would have been much harder (in some ways) if I had a job.
Charlie and Angela, you’re both in my thoughts and prayers. You are much braver than most (myself included) and I hope to one day have your courage.
The stigma of mental illness is something I have been thinking about a lot in the past year. We all need to open up the converation about this more because we all go through it or see a loved one go through it.
Rebecca Prien says
Angela and Charlie, I am proud of you. You, as I’ve know you to do, exhibit strength and love. And courage. I send you love and prayers and just general comraderie (because I know the depths of acute depression and I applaud you for speaking out.) Please let me know if I can offer anything that helped me. Much love, Rebecca
Thank you for writing about this.
Charlie, we first became friends around the time that I began treatment for severe anxiety, or just before it. I think we’d both agree that I am so much healthier in comparision but still, I do feel that there is a bit of a disconnect betweet what we are and aren’t allowed to talk about.
Mental illness doesn’t have the same level of secrecy around it as it did a few years ago, but there are certain facets of it that we aren’t really allowed to talk about. Suicidial ideation and self harm are very much taboo so I appreciate you and The Bloggess talking about it logically.
My life got crappy last year on both the work and personal front. I had the anxiety spiral, which is a lot easier to cope with when you are medicated. It’s so incredibly frustration to lose control of your mind when you are smart and are very much aware of what is going on.
I appreciate you writing this both from a business and personal perspective. Posting this has the potential to help more people then you know.
@jadecraven I remember, Jade, and maybe know you can see how I understood more than most. Angela’s always had fairly high level anxiety, although this period was off the charts.
I hope you’re doing okay, too. I’d love to know – you know how to reach me and you’re welcome. 🙂
Charlie…for all the good you do…and you do plenty….this may be some of your best work yet. I am grateful. My best wishes and hopes for you and your family.
@mike_wilson Thanks, Mike – it’s rather humbling, but I also understand.
@CharlieGilkey Thank you for sharing Charlie!!! May have saved a life.
I’ve written before about my own experiences of mental ill-health, and I have some small idea of how tough the past months have been for Angela and for you. I send you and Angela much love, deep thanks for your honesty and my very sincere wish that you both find the right balance for your well-being in the weeks and months to come.
I don’t know how to express how grateful I am that you and Angela are sharing this here. I fully believe that talking about mental health and illness creates meaningful change, both for individuals who read/hear this and for the larger culture. Thank you both.
@Kyliewriteshere Thanks and hi, Kylie!
Charlie, your courage in sharing your story and Angela’s is breathtaking. It is so important that we de-stigmatize mental illness. As another commenter said wisely: “This may be your best work yet.” Thank you.
Keeping you and Angela in my thoughts. Thank you both for speaking so clearly, wisely and bravely about this issue. I’ve been supporting a friend in a similar situation for some time now and one of the biggest challenges is that it’s just so hard to talk about in a way that is both true to the challenges of the situation and yet doesn’t push people’s buttons in a way that impedes the possibility of further conversation or useful support.
You’ve managed to do this beautifully!
I’m proud of both of you and the resilience you’ve demonstrated. It can be hard to surrender when it seems like you need to fight.
You’re both in our prayers and thoughts. Please know that we’re here for you guys.
Big love to two special people. You are in my prayers and thanks for so bravely sharing your story.
Thank you so much for sharing this with us. I know it will help to remove the awful stigma that is associated with mental illness. More importantly, it gives hope that the strength and perseverance you’re demonstrating is possible for the rest of us. You and Angela are in our thoughts and prayers.
Thank you thank you thank you thank you.
I wanted to jump in briefly and say how much we appreciate the feedback, kind words, and love. We’re listening, even if we’re not replying a lot.
@CharlieGilkey my thoughts are w/ you both in this difficult time. I have high hopes that 2012 will be a more peaceful year for everyone.
My heart goes out to you and Angela, Charlie, for all that you both have been through. I am so glad you are sharing your experience, as hard as I know it must be to write these posts. They are so incredibly important. Thank you.
Thanks Charlie. As a fellow UC sufferer, I’ve so far done my best to convince the docs that I will not take prednisone, but w/ every flare up they have another argument for it. This is a brave story for you both and frankly the more people talk about things that are scary and health related like this, the more we can support each other and find compassion. I always say you can’t tell by looking what’s ‘really’ going on with a person – so find the place of compassion. always.
Tom Southern says
Thanks so much, Charlie, for sharing your and your wife, Angela’s, experiences.
Mental health is only a stigma because we allow it to be. Here, in the U.K. the figure for those living with mental health problems is 1 in 4 (that’s just adults) as promoted by a leading charity here.
I think mental health is everyone’s interest, and much more understanding and openess would deminish the sense of isolation for people living with illnesses. After all, I think a lot more of us are affected by mental health issues than we think because many of us are not “diagnosed by professionals”.
You bring us your and Angela’s experiences so openly and honestly that you show how much strength you have. Although strength might seem a futile quality at this point, strength comes in many guises.
Your analogy about it “like being able to see yourself falling but not being able to do anything about it at the same time that you feel everything that comes with falling.” moved me because this is such a common experience.
You and Anglea are not alone.
With gratitude for your willingness to share, Thank-you.