Coping | IBD
Healthy normal people can’t possibly understand what it’s like to have a lifelong, chronic, debilitating, invisible illness. They can’t possibly understand the amount of pain someone like myself experiences every second of the day- pain from the disease itself and the horrible pain from the many surgeries we have had to have. The pain is not like anything in this world. Pain that stops the breath in your chest. Pain that makes you crumble to the floor, pain that causes you to see colors, pain that makes your head spin, and pain that makes you vomit. The pain is relentless. The severity of it soars to unimaginable highs and barely tolerable lows, but it’s never completely gone.
They can’t possibly understand the overwhelming fatigue that has taken over our bodies. So many days the only thing I can manage to do is lay in my bed- forget even just walking up a set of stairs, let alone leaving the house to do any sort of normal thing we used to. Just getting out of the house is so often impossible. Do we want to get out, see our friends, have some fun? Yes, we do. More then anything. We aren’t staying home because we’re lazy, that’s for sure.
They will never understand what it’s like to have a buffet of medications that we have to take in order to survive. Yes, these medications are nasty and we’d rather not have to take them, but if we don’t, we can’t make it through the day.
They will never understand what it’s like to have the stigma of being a drug seeker or addict thrown at them. That pain I was talking about needs to be managed. To do that, we have to take medications that can be dangerous and addictive, but we have no other option. These medications aren’t a bad thing when we use them the way they are intended to be used. We are only taking them so we can keep at least one foot in life outside of this. Don’t judge us by what is in our medicine cabinets. It’s not necessary for the people in our lives to over worry about the meds we need to take. We are under the care of doctors and we are working together to manage the whole situation. They wouldn’t give us these medications if they weren’t completely necessary.
They will never understand the emotional toll that it takes on us. No, that doesn’t necessarily mean that we are depressed. That means that we are angry, sad, frustrated, and stressed with what is happening to us and we are completely allowed to feel those things.
They will never understand the grief we deal with on a daily basis. We grieve over the loss of the life we had before. It’s not to say that we can’t still find happiness in this new life, but we have to grieve the one we lost. We grieve for the various organs and body parts that have been taken away from us. We grieve over the loss of jobs and careers. We grieve the loss of our hopes and dreams. It’s not to say that we won’t develop new hopes and dreams, but we have to grieve the ones that are now out of our reach. Loss is one of the nastiest parts of this disease.
They will never understand what it’s like to feel like a burden to our friends and families. We want nothing more then to be out in the world living our lives, working, having fun with friends, and going through all the normal stages of life. Instead, we are adults stuck living with our parents because we can’t care for ourselves right now. Not being able to work means that we are financially dependent on our families and that makes us sick. We want to be out there, providing for ourselves. Paying all of our own bills.
They will never understand what it feels like to feel like we are always on the outside. Our peers and friends are moving on with life, growing up, starting careers, getting married, and having kids. That isn’t our reality, and unfortunately, and no fault of anyones but the disease. The things we have in common with those people are disappearing.
Even though the love between us and those people is still there, it’s hard to spend time with them, because both sides don’t understand what the others’ lives are really like.
They will never understand what it’s like to have an invisible illness. A disease that demolishes our insides, but rarely leaves a visible trace of its destruction. Just because I take a shower, brush my hair, maybe put on some makeup or nicer clothes does it mean that I’m 100% good to go. I’m still sick, I’m sill in massive amounts of pain- we do have an incurable, chronic, debilitating disease, after all. Once in a while, though, I need to do that stuff in order to feel just a little human. Don’t ever assume that just because I put on some mascara, I’m feeling great. I’m not.
They will never understand what it’s like to be trapped in a ticking time bomb of a body. The fear of what’s around the corner, of what’s going to go wrong next. We are trapped in a body hell bent on killing us. It looks at us like a foreign invader and it’s only job is to attack and kill us. It’s terrifying.
They will never understand what it’s like to think that not waking up in the morning would be a blessing. With all the pain and suffering, it’s completely normal to think that. All of the agony, fear, disappointment, anger, and sadness would be gone. Just like that. Do we want to die? No! We just want to feel better, so every single second of every day, we are fighting to live!
They will never understand what it feels like to be pitied. We don’t want you to feel sorry for us. We want you to help lift us up. Pity doesn’t do anything for anyone other then making us feel small.
They will never understand what it’s like to have people in their lives who think they’re doctors or that they know better than the doctors because they used WebMD to read the definition of Crohn’s disease. Or instead, maybe they’re just that pompous and just think they know best. We do not need you to micromanage our care. It’s our care. This isn’t something you should be trying to control. Lighten up already- we’re already under enough stress and pressure. Since you aren’t my doctor or any doctor for that matter, stop thinking that you have to control my care. It is not ok for you to tell me what treatments I can or can’t do, what meds I can or can’t take, and really anything I can or can’t do. We don’t need your advice on what diet to try or any of your baseless medical advice. Believe me, if there’s anything that would improve my quality of life, I’ve explored it and I’m already doing it. If you want to help, be supportive. Be caring. Be compassionate. Love us. Have a little empathy for what we’re going through. Please.
This is unimaginably difficult for everyone involved but it’s most difficult for us, the person with the life long, chronic, debilitating, invisible disease. We are the ones carrying the majority of this load.
I can promise you this- if I could have any other life besides this one, I’d snatch it up in a heart beat. Unfortunately, this is the life I was handed.
Normal healthy people don’t have to understand what we go through, but it would be so amazing if the normal healthy people in our lives could cut us some slack and just unconditionally love us.
Sara Randall is a 33 year old veteran. She first started having health issues while in the Army around 2005. Following her IBD diagnosis, she was medically discharged. Almost 12 years later, her doctors are still unsure which form of IBD she has. Sarah had a total colectomy and her j-pouch created in 2009. Since then, she’s been in the OR for one thing or another over 150 times. She’s had five ostomies, multiple fistulas, and a several other complications related to the disease or the surgical trauma her body has endured. When she’s healthy enough, Sarah plays volleyball, goes on mission trips with her church, goes camping and hiking, and spends time with her amazing dogs and the people she loves.