Living with a Chronic Disease: The Reality of Constant Discomfort and Adaptability

Having been diagnosed with severe pain, or total, ulcerative colitis, I always find myself trying to explain to healthy people what it is like to live in constant discomfort and pain. It's not as easy to do as they think or imagine — that much is clear when I can see the half-comprehension in their eyes as I attempt to define my disease to them. Often times in the past, I'd compare it to a terrible period that never ended, complete with menstrual cramps that could cripple a full grown man. Eventually, I started to explain my disease using one simple sentence: "It's like having food poisoning from Taco Bell that never ends."

To live with a chronic disease, one must understand the entire embodiment of the word adaptability. Whether the disease is one of chronic pain or fatigue, it doesn't matter — the human body and mind will adapt in ways most healthy people are unable to comprehend. Often times, people have adapted so well in living with their chronic disease that many of their closest friends and relatives fail to realize the full extent of the effects the disease has on them. Why? Simply because they do not appear sick. If you don't have a runny nose, a visible rash, a raspy voice, or happen to be a senior citizen, well, it is hard to understand how a person could be ill.

The reality of living with a chronic disease isn't a reality that one volunteers to enter. It is a tough world of self-denial, expensive medications, anxiety, fear of rejection, and a constant fight with depression. A person with a chronic condition can even know more about drug side effects than their own pharmacist or doctor. It can be even tougher when those you love don't understand why you can't do all that they can, even with medications. The fact that I don't appear ill is often the reason they are unable to understand my needs and fears.

Eventually, I grew frustrated that people — healthy people — didn't understand why I was exhausted all the time, and soon, I found it necessary to explain how I lived day-to-day. Now, I have my own way of explaining my chronic disease to people when they fail to comprehend my anxiety and fatigue. My explanation goes somewhat like this:

Imagine a world where the word healthy equates with wealthy, meaning healthy people have an almost infinite amount of money stored in their banks, pockets, and wallets. They never worry about not having money because that is hardly ever their problem. If need be, they only need to stop for a moment at the nearest ATM before they can get to spending again. Now, imagine that in this world, having a disease or chronic issue equates with poor. These people with diseases mind everything they do, everything they spend, and constantly worry about whether or not they can afford even the simple things in life, like a hot bubble bath or ice cream. Those with 'financial' difficulty can get help from the government (pretend things like food stamps and unemployment are like medications and therapy), but often times that is not enough and can be a blow to one's pride. If they 'overspend', they pay a hefty fine, and if they 'borrow', they have interest rates and debt that they may not be able to pay off. They can't just "walk it off" if it takes more than what they have in the 'bank' to do so.

...I believe that this analogy explains the situation rather well. It puts in perspective the concept of good health, as well as the concept of bad health, using terms that everyone can understand. Essentially, with this analogy, health is compared to money, which everyone understands in every language.

In the long run, the Grim Reaper doesn't give a shit who or what is in his way. Money can buy time but not exemption. The only way to defeat that prick is to acknowledge post-season play.

Hello Simiberry.Thank you for sharing your thoughts in this way. The food-poisoning analogy is the one that captured my attention to use on other people as it is short enough for people to retain in their small attention span. The financial one may well be a much better analogy for yourself (and us)but, in my experience, people are likely to switch off after the first few words. When people ask How are you? - what they are really asking is Are you well? - and what they hope to hear is a yes or no answer. The number of people that can concentrate past the yes-no answers are so few and are between, you might just as well be betting on the lottery. One of the best things about a site like this is that we do like to hear the explanations, details and how people feel. With us as your audience the financial analogy is very pertinent and, as you say, understandable to everybody.Sorry to sound so cynical about the majority of people's ability to listen but this cynicism has evolved over many years of practical experience. Best wishes Bill

That's true. Usually I just leave it at the TB poisoning, but when I see that they still don't quite comprehend my situation or another's, I explain it in terms of money. I find it's necessary sometimes to remind even my closest kin why I appear lazy. And don't worry about sounding cynical, I know full well about the majority's attention spans. I do have a couple of people in my life who are willing to listen to this explanation, though, so I feel very blessed. I was just upset one day when I wrote this and was feeling a bit philosophical at the time... and it resulted in this little essay. It helped me vent, and I keep it on hand to remind myself I don't—and shouldn't—try to keep up with my much healthier friends.

Hello Simiberry. You are indeed blessed if you have someone who will listen. I too find that the process of writing these sorts of concepts down helps. I tend to vent by writing mine in rhyming verse and I'll give a copy to those who 'might' be interested. If they continue to show an interest in the subject matter, then I will enter a pertinent conversation. For me this rarely happens and I take it as an indication of how many people 'really' want to know. Normally if anyone asks How are you? I will smile and lightheartedly say You don't want to know! This seems as truthful reply as I can think of and lets us both off the hook in terms of continuing that line of conversation. Fortunately, I am rarely short of other things to talk about so it's not necessarily a conversation stopper altogether.I did like your post very much and hope to read more of your contemplations soon. Best wishes Bill

Hello again Simiberry,Just to let you know that this post of yours has motivated me to some rhyming verse which I have blogged separately as How are you? -brief responses. I hope you enjoy the poem. Best wishes Bill

That's so nice to know, Bill. I never meant to inspire poetry in anyone, but I am happy to know I motivated anyone to do anything that may have helped them. And by the way, you can just call me Simi. Everyone does. I'll get right on hunting down your verse.

Thanks darl, you put it in a nutshell too, I hate explaining my ulcerative Crohn's all the time. To be honest, I have B.S. and said I had something else sometimes. It's too much and after 22 years, I'm really over it all. Kinda been why I don't pop in here enough, I'm finding I have been getting more depressed as I have had this since 23 and I'm 45 now. When I started to look back on all my years, I started to feel moody and pissed off. I am trying some anti-dee medicine as silly doc gave me tabs that popped out stoma, so I now have medicine but it's kinda like for me anyway, 1 week and I think nope, it's not helping. I think I have been on my anti stuff 2 weeks, don't feel any better. Simberry, you have no idea how you can or do inspire people. I have no idea myself, but I liked what you wrote. Thanks darlz :)

I had to respond to your post, Simiberry, because it really made me think. I was diagnosed with UC when I was 13 years old. I am now 53. I had my ostomy surgery 4 years ago and had my rectum removed last year. I am now looking at life from a very different perspective. It wasn't until I was feeling well that I realized how my thinking was so different from other people's for the last 35 years that I had dealt with a chronic disease. While I have done most things I have set out to do in life - college, work, etc., I realize how much I did was through the eyes of someone who never knew when things would get bad. I never volunteered for something that was too far in advance because I always worried, "What if I get sick?" It was so difficult to make any kind of long-term decision because of that constant fear. Now that I am well, I find I am volunteering for things at work and making long-range plans that I never would have done before. It's amazing to come to the realization that this is how most people live. I can't imagine what life would have been like years ago if I could have lived like I am living now. Again, I feel that I have been able to accomplish most of my goals in life, but always with hesitation and "what if" in the back of my mind. Just some thoughts that your post brought up for me. I hope you are feeling well.

Hi simiberry, I definitely agree with everything in your post. I've now been diagnosed with Crohn's, but before then, I was having symptoms for about four years, and I could never explain to people what was wrong with me. Now I have a name for it, it's so much better to tell people, and even if they don't know what it is, they can look it up if they want to. What you said about people not thinking you're ill because you don't appear sick is so true. My symptoms were never visible, so people thought I was fine when inside, I felt like curling up in bed and never getting up again! Even doctors started to disbelieve me because my symptoms were so on and off all the time. Only after I was admitted to the hospital in pain and ended up having three operations did the doctors finally realize there was something actually wrong with me!

Hi Simiberry, I have UC for a little over 20 years now and am tired of trying new meds. I asked to be taken off Humira and get J pouch surgery (hopefully in January). I'm tired of abdominal pain. People without IBD advise against surgery, but they have healthy colons.

Very true, pitterpatter. I hope your j-pouch surgery goes smoothly! I never got the chance to have Humira—it cost $1000 a pop for me with insurance, and then I was diagnosed with C. Diff overgrowth, so I was unable to try it. I did do Remicade for a while though, and it helped somewhat, but not enough soon enough. I had C. Diff for 3 years and the scarring and inflammation resulting from the overgrowth led to my j-pouch surgery and current ileostomy. I will say this, it takes a lot of getting used to, but your pain will decrease by an amazing amount. I'll be having my ileostomy reversal November 14th. Gotta say I'm excited to be free of the bag and have a pain-free abdominal area!