What I Wish the World Could See

It was Valentine’s Day, 2017, just over four years ago now, that I was formally, and finally, diagnosed with an inflammatory bowel disease and nothing in my life has been the same since.

I spent the evening before preparing for my first colonoscopy. I had a place all set up with blanket and pillows halfway between the kitchen and bathroom so I could choke down large glasses of prep every 15 minutes then run to the bathroom after throughout the night without waking my wife. It was the first of many depressing evenings we’d spend apart because of this disease.

I was only 32 and far too young in my mind to be preparing for my first colonoscopy, but I knew something was terribly wrong with my gut. I’d been bleeding more and more heavily with every bowel movement up to 15 or more times a day for over a month before and between the pain, exhaustion, and fear I was left little more shell of myself.

The disease was already chipping away at my work performance, my relationship, and my sense of self worth. In that short time, I had started missing days at a time of work. I was unable to socialize with my friends and family. I was too tired to spend time with friends or family, take care of my home, or do anything of the things I enjoyed. It would be my first lesson in this disease. It doesn’t take long for it to strip you of everything.

Arriving at the doctor’s office my dignity was quickly stripped as my clothes we removed and I was wheeled lying down into a room to face doctor whom I’d never seen and who would see more of me than anyone had. I’m thankful for the sedation that came next and the memories I will never have.

I woke afterward, confused and hungry, in a small room with my wife waiting for me to return. She helped me dress and suffered my memory lapses through the last of the sedation. I remember only bits and pieces of what was said then. I remember being handed a packet of papers printed with images from inside my body in exquisitely horrifying detail.

I remember the words ulcerative colitis coming from the doctor and trying to connect the meaning of the diagnosis to images of deep red seeping through the inner wall of my large intestines.


Ulcerative colitis is a type of inflammatory bowel disease, similar to the more widely known Crohn’s disease. My official diagnosis is Ulcerative Pancolitis, meaning that my entire colon is chronically inflamed. This causes debilitating symptoms and, if untreated, can lead to life-threatening complications.

Since that Valentine’s day I have experienced some of life’s steepest ups and downs. There have been a myriad of treatments, procedures, and pills that all work for a time before the troubling but all too easy to dismiss symptoms return and I head straight back to square one. I’m still searching for a new and lasting normal that I can live with but as more years pass and more damage is done the ultimate and last line of defense approaches—surgery to remove my entire colon.

This may sound like a “cure” but I am assured that I would simply be trading one set of problems for another. Still, from here, life without a colon looks better and better all the time. Until then, there are steroids and immunosuppressants. There are meal replacement drinks, supplements, and probiotics. Until then I am simply surviving, but I wonder, at what cost?


To be fair to my body, most of the hardships I face aren’t all down to the healthcare system with its exuberant costs and many layers of bureaucracies. Most of what makes this disease hard to live with comes from society with its values and norms that when can’t be met place the failure squarely on the individual and names them inherently weak, broken, and attention-seeking.

The hardest part, in other words, is a lack of understanding on the part of people who do not have to fight the same battles I do.

The truth is, my disease is often invisible so in an effort to make my life—and the lives of those who suffer similarly—easier, I’ve decided to quit bearing this burden in silence. I’ve decided not to pretend I am normal or delude myself into thinking that I can keep up. I do not hide and I do not minimize. I advocate for myself. I ask for help and insist on rest. I make this invisible disease visible. I educate everyone around me.

So, in that vein, here are some of the ways inflammatory bowel disease has changed my life that I wish the world could see:

Pain

When I was first diagnosed, people were very sympathetic to the pain I was in but as the days of pain became weeks and months at a time, I noticed the comforting words waning. Someone at one point said to me, “If it’s everyday I would just assume you would get used to it.” You don’t “get used to” pain. It never stops hurting the same as the first time and as long as I am flaring it never stops hurting. I can push through the pain but you can’t imagine the energy and emotional toll that takes to complete everyday tasks though this.

Fatigue

It’s not the same as tired. It’s a kind of exhaustion that can’t be cured with more sleep, though the body tried. Drowsiness overwhelms me and like a someone who is starving and can only think of food, or severely dehydrated and can only think of water, my mind is often consumed by thoughts of sleep. My mind plots at work looking for dark corners to close my eyes in and I daydream about the moment I can go home and lay my head down. I’m often unable to fight off the drowsiness and days have gone by where tasks, events, and even quality time with my loved ones have to be put off.

Medications and Meals

Ulcerative colitis, though it is a disease that affects the gut, it is not a disease of the gut. It disease primarily of the immune system and this means that treatment includes both strict medication and meal regimens.

Most of my day is structured around my treatment and nutritional needs. I have alarms and reminders that tell me when to eat, when to take medication, when to take probiotics, when to drink water, when to take supplements, when to add fiber, and when to eat more. It’s a lot to remember, and there are days when I don’t want to live this way. It’s a lot and often it doesn’t seem worth all the effort when I still have debilitating symptoms.

Worse still, when you find what does work, that doesn’t mean it will work forever. Finding the right medication or combination of medications is a matter of trial and error and after beginning a new course it can take weeks or months to know whether a combination or strategy will fail and the process of trail and error must begin again.

Embarrassment and shame

I’m 36 years old now and have had at least 3 or 4 colonoscopies. I will probably have another before this year is out. I have given countless stool samples, sent emails to doctors describing my bowel movements, and submitted paperwork to my bosses explaining my symptoms in great detail.

I’ve used every kind of suppository and enema, cream and wipe. I carry a card in my wallet that explains that I have a medical condition and must be given access to a bathroom when needed. I’ve had accidents when I couldn’t get there in time and now carry a second set of clothes with me just in case it happens while I’m at work or out and about.

These sentences my gross some of you out, but this is my life. I often feel that I have no dignity left, that privacy is a luxury I cannot afford, and that there are whole parts of my experience and many emotions I have to keep hidden out of embarrassment.

Fear

There is so much that is unknown about this disease and without a cure it’s hard to look forward to a life that will look any better than it does when you are exhausted and hurting. I’m afraid of what this disease is doing to me. I’m afraid of what the medications are doing too. I’m afraid of being too much of a burden. I’m afraid of falling behind. I’m afraid of accidents. I’m afraid of food. I’m afraid of surgery. I’m afraid life will never be like it once ways and I’m afraid I will feel like this forever.

Losing your relationships

It’s hard to ask so much from other people. You wish you could be the strong and capable one and take care of others for a change. Over the long-term caring for someone with a chronic disease can be fatiguing in itself. This is normal. This is okay. I have to accept that on some level I do require extra accommodations and emotional care and that means others have to give a little more when I can’t.

I try to be mindful of how much I ask and how often, and only take what help is absolutely necessary. Still, there are months when the flares won’t end and the house is falling apart or my work is falling behind and I am forced to take more than my fair share of the rest rest and respite. In those moments I see the look on other people’s faces. I know they are wishing I was better, and wishing it wasn’t them that had to take on more for my benefit.

Losing yourself

Before my diagnosis, I enjoyed being somewhat active. I used to run and hike. I did simple body weight workouts at home. I went out with my friends. I hardly ever missed work and had a reputation as an exemplary employee who went well above and beyond. I was happier, funnier. I was enthusiastic, focused, and hopeful.

That version of me still exists somewhere. I see glimpses of her when a new round of steroids is started or moments when remission looks possible. When there are days without pain and I’ve been able to sleep for a time, she is there, reminding me that not all is lost, now or forever.

But on days when all I want to lay in bed, when the weight has been coming off and I still find food terrifying, when I’ve had to call out from work again and my wife is missing the person I used to be, on those days, I cannot even recognize myself or this life I’ve come to live.

Love and Community

Ulcerative colitis can be an incredibly lonely disease. No matter how you explain, no matter how much your loved one’s want to understand, no one can know what it’s like to live through what we do, not even our doctors. The biggest help I have found is in support groups. When I have questions, frustration, or fears, there are thousands of people all over the world ready to offer information, advice, and support.

In addition, it’s a credit to my coworkers, friends, family, my healthcare team, and my amazing wife that I have been able to work, love, and live through such pain, fear, fatigue, and shame. Without them I would not have been able to achieve the—admittedly few and far between—glorious months of remission I have known. It is through the love and care they have shown me me that I was able to love and care for myself. It is with them that I have been shown how to find joy in the darkest of times.


This World IBD Day, my heart goes out to all those who truly know what it’s like to live with this disease. No matter how severe your symptoms, or where you are in your treatment, I see you. I know your struggle and I know your bravery. I know how hard you are fighting and I hope you know that even at your worst, at your lowest, at that moment when you want to give up most, you are a warrior.

You are not invisible to me, and I hope one day we will all be more visible to the world.


222 // A Miracle Morning

I woke up to a miracle this morning. For the first time in months, I woke up feeling somewhat…normal. My body was, for once, cooperating, functioning, not in pain, not in distress. It seems I may have, or, I hope I have, turned a corner in my healing. I just not entirely sure how or why it’s happened. My gut tells me—no pun intended—there was no one cause but finally everything I’d been desperately trying finally coming together.

I’d been taking my medications and supplements religiously. I’d been meditating day and night. I’d been hydrating continuously and practicing intermittent fasting. I’d been resting and doing things I enjoy. Then last night, I switched for just one meal to a low-residue diet and I think this, coupled with pure coincidence, was the last puzzle piece I needed.

My wife went off to work, so I spent my day and this new found energy doing a few of my favorite things: cleaning, collaging, drinking coffee, and catching up on the Science of Well-Being course. I did my best not to think about tomorrow, and for the most part I succeeded in simply being.

That isn’t to say today was a perfect day. I did have a migraine that would not subside without harsh medication, caffeine, complete darkness, and sleep sounds courtesy of the Headspace app. An hour like that fixed me right up and the rest of the day rolled on.

And now the day, for good or bad, is coming to a close. The sun is streaming through the western windows, bringing blistering heat that leaves me feeling heavy, suffocated, lazy, touchy. I anticipate the joys and trials of the day will fade into an uncomfortable eagerness to end the weekend and get on with what the work week will throw at me. I’ve had enough of rest. I’m ready to begin.

215 // This Is Not Optimism

Another bad night and another bad morning to follow. After a night up with pain and down with worry and low self-esteem, I’m tired beyond words today.

I started by trying to fight the fatigue. I got out for a short walk with the dog and made grand plans to clean the house and get some much missed writing time in but I lost the battle quickly to naps that were only interrupted long enough to eat and apologize to my wife before falling asleep again. The rest did me good, though. By early evening I felt part of the living world again and managed to mark one or two check marks of my to-do list.

I’ve already decided to stay home tomorrow. I already know that I’m not ready yet to return to work. I’m taking my medication, staying hydrated, and meditating to manage symptoms, but I’ve just gotten so bad that recovery will take more time and patience than ever before.

In addition to take I’m doing my best to stay optimistic, but like everything else, it’s harder some days than others. Sometimes I wonder what the value is in optimism at all. It feels like nothing but another kind of pressure, another expectation I can’t meet. I don’t want to be optimistic. I want to be realistic. I want to be angry. I want to be sad. I want to be negative and nihilistic.

But that isn’t me, or, it isn’t all of me. I’m angry, but I’m more than this anger. I’m sad but there is more to life than this sadness. I’m in pain but outside of this pain there is still beauty, love, and life.

When you have a chronic illness time moves slower. A few weeks of flare up can begin to feel like your whole life. The pain and pessimism become all you can feel, see, and think about. This low quality of life stretches out behind you and in front until no way out can be imagined. Memory of healthier times and the hope of healthier times to come fade.

I know this is a lie. I know that this struggle is as temporary as every other struggle I have overcome before. Soon, one way or another, things will get better. I will get better. This is not optimism, this is truth. This is being realistic. This is no expectation or pressure. This is an inevitability.

214 // A Brief Normalcy

Today is a better day. I’m feeling more solid, physically, more present and connected to my body, stronger. This is always the first sign of healing. Before I can see tangible improvement, before I can see or feel exactly what and where I have begun to heal, I feel it in my spirit. A corner has been turned, but I know that doesn’t mean that the journey won’t be agonizingly slow and that setbacks are not on the horizon.

And so, because I was feeling a little better and because I have been feeling so down, I decided to venture out with my wife for some shopping therapy. The weather was gorgeous and having a few new things for the home made a big difference in my mood.

Of course there were tough moments. This ulcerative colitis flare has progressed so far that I’m left with a great amount of fatigue, pain, discomfort, and anxiety almost all of the time. There were moments today between all the positivity and the hopefulness, when I wanted to break down, but I breathed through it. I sat with my pain and fear and fatigue and I gave it space to breathe too and each moved to let me pass for a time and I am grateful for the brief feeling of normalcy.

Unfortunately, the outing was still just slightly little more than I could handle and when I got home, I crawled right back into the bed to recover.

The evening is settling in now. We have some rain clouds cruising in from the mountains, but they don’t appear too threatening. I’m looking forward to a calming and cleansing rain. Much of my cleaning was done last night and I’m basking in the peace of knowing I have nothing I have to do and nothing anyone is asking of me. I may write for a while or work cut and compile a new collage piece.

Or maybe I won’t push myself to make, or read, or write anything at all. Maybe I’ll give myself permission to just lay on this couch, watch some mindless TV, and enjoy a couple of glasses of wine with my wife before turning in early. I deserve it. I need it.

140//366

It’s infusion day, again. This one is a little more special. It’s the last of what they call the “loading doses”. After this I go on a more regular schedule of every eight weeks, as long as all the tests they did at the lab beforehand come out stable that is. We still have to see if the drug levels are where they should be and if my white blood cell counts and a few other things are where they should be.

I’m still dealing with some questionable and slowly worsening symptoms, but I’m in contact with my healthcare team and no alarm bells are going off yet. A few more tests have been ordered and I am being asked to hold off on lower the dosage of any of the medication I am currently taking which is a real bummer. I was looking forward to at least one less pill a day for a while.

The center is still a lot quieter than usual. I think non-essential procedures are still being postponed. It was nice to be to be out of the “broom closet” private infusion room and back into the open area with the big bright windows again but the nurse warned me that next time I may not be so lucky.

I know other people need these spaces, but it bothers me that because my infusions are shorter; I have to be shut into a windowless room and every time I bring it up t the staff I’m brushed off. I don’t think they understand that it’s depressing to be there no matter what your condition or how long your infusion takes. I should at least get to see the sun while I’m there.

086//366

It feels like it’s been months rather than weeks since I last had to get up and get anywhere on time. Today is my infusion appointment. My third out of the first four they call the “loading doses”. Getting out of bed and then getting ready was difficult. I’m just not used to it anymore but at least we were able to leave the house a bit later this morning knowing that there would be minimal traffic on the roads.

I’m hear now and about halfway through the bag of medication. I’m not in the small windowless and cramped room they had previously shoved quick infusion patients like me into. No, I’m back out in the big open room, but it’s not as cheery as usual.

The blinds are drawn and there is no sun or mountain views from my comfy recliner, and the place nearly empty. The nurse working with me explained that most infusions have been cancelled to reduce spread of the virus. Only chemotherapy, inflammatory bowel, and other patience who are relying on this place to keep them at optimal health are allowed in now. I’m ashamed that made me feel important.

I hope by the time I come back at the end of May things will be a little more like normal again and though that means I’ll most likely be back in what my wife calls the “broom closet” for my infusion I need the sun and the people, the smiles and cheer. This place, though by definition is a sad one, has paradoxically always been a source of encouragement to me.

091 // I Can Move Again

Starting new medications means trading one set of side effects for another, and this causes the paradoxical condition of both feeling better and feeling worse at the same time.

My energy has returned, my joints so much feel better, and I’m no longer feeling bloated and heavy from the moment I wake up to the moment I lay down to sleep at night. Instead, though I have rolling headaches and nausea, and sharper pains in the belly that come and go.

It’s hard to gauge whether one medicine or another leaves you better off or worse but for me and for this medication, the relief from joint pain alone is a godsend. Not only can I move again, but being still is no longer painful either.


These entries are inspired by Thord D. Hedengren

086 // It Could Be Worse

I was finally able, after weeks of back and forth with my doctor, my insurance provider, the pharmacy, and the drug company, to get my medication and now I find myself almost too afraid to take it! They really should try to find gentler wording to use in those warning packets they give you the first time, you know?

I wish I felt comfortable enough to share the outrageous cost of the medication here but I will tell you that after ringing up the bottle the pharmacist simply started at the screen with a look that was equal parts confused and astounded.

He wouldn’t even speak and only after I told him he was worrying me and asked him to please explain the look on my face did he ask me what I normally paid for the medication. I told him that whatever the cost I wasn’t the one paying; it was the drug company, and he sighed relief on my behalf. When the price came up on the card reader, I understood his shock. Even if it wasn’t my money, it hurt a little to swipe that card.

No matter what I go through in this shit show of a healthcare system I am constantly reminded that it could be worse. I could have had to pay that price tag with my own money, and in all honestly, that price would have been many times larger if I didn’t have insurance at all.

I’m frustrated for me but I’m wholeheartedly sorry for those worse off. I hope change comes soon and we all get relief from this cruel and unnecessary bureaucracy.


These entries are inspired by Thord D. Hedengren

076 // A Body That Won’t Cooperate

I’m feeling awful today. My head, my stomach, my whole body! And I’m so tired. I got nothing done and now I’ll have to spend tomorrow trying to redo today.

I guess that’s not so bad, as long as I actually feel better. Either way, I will do my best and then I’ll do just a bit more. I want to hit the ground running this week and get some shit done this week. I don’t have time for this chronic illness crap. It’s so frustrating to be inside of a body that can’t, or won’t, cooperate.


These entries are inspired by Thord D. Hedengren

074 // I’m Still Waiting

I was supposed to begin my new medication today but there were more complications at the pharmacy. Now, even though my doctor has ordered the medication and even though I have already done a cost analysis, the benefits department still has to take one more look just to make sure that, I dunno, they still want to pay for it or whatever.

I sat in the waiting area for half an hour only to be told it would be at least a few hours more. They would call me theytsaid. So, I left the pharmacy nearly in years and went back to work to wait anxiously by my phone and got no phone call at all. Now, I’m still waiting, still frustrated, still not on medication, and seriously considering changing course and going back to infusion medications for which financial support has been easier to navigate.

My night wasn’t much better. I made a grave scheduling mistake and we ended up driving across town for an event that doesn’t take place for another week. So, to help cope with my embarrassment and guilt I proceeded to overstuff myself with a double cheeseburger and a bag full of cajun fries for dinner. Afterward, we snuggled in on the couch and watched trashy TV dramas until I felt calm enough to put the day firmly behind me and head to bed.

Tomorrow has to be better.


P.S. I want to take a moment to acknowledge that this is my 100th post here and to say that while I have only just begun to work out what kind of space, this is it has already been an immense joy to have. Too much in fact, I’m afraid. It’s been a complete distraction as well and while I know eventually I’ll have to venture out from the warm comforting glow of this new place, I’m happy for now just to explore, to tweak, to write my foolish words, and to be ignored. Thank you all for reading.


These entries are inspired by Thord D. Hedengren