How do you think of yourself being chronically ill?

[PhoenixBird]

I was diagnosed with UC last December, so it's been almost a year for me trying to get my head around this disease. I've found that since my diagnosis, even on a relatively 'good day' (I'm not yet in remission) that I still think of myself as sick. It's easy to make myself believe, because the rest of the time, I am very sick with this disease.

I'm currently on extended sick leave from work and I go back mid-2013 once I've had surgery (appendectomy).

I talked to my counsellor about it but she really didn't understand that this feels like a permanent state of mind for me now. I am sick all the time. I will always think of myself as being sick all the time. I wonder, will this ever change, and how do all of you think of yourselves--as healthy when in remission/sometimes sick/always sick?

It's hard enough lying when people you barely know ask how you are: 'Oh, I'm okay', and then having a seperate more realistic answer for people you know better who actually know your situation. I've found myself having a knee-jerk thought to compliments like: 'Oh, you look good today, you're better then?' I find it always a depressing thought to think rather than say. 'No, actually I'll always be really sick, I'm just clearly putting on a brave face today'.

I just wonder how I will ever get my head around having this disease.

 

[UnXmas]

I have other illnesses besides IBD, which aren't curable or treatable, which contribute to how I feel on this. I think of myself as chronically ill, but not as disabled. I think that's accurate. My life is limited by my health problems and I always feel bad in some way, but I'm fully mobile and able to do most everyday tasks, etc. I was in denial for a long time and pretended I was healthy. Or I would think of myself as "healthy" but with stomach problems. This attitutde didn't do me any favours. I just ended up frustrated and not understanding why, if I was healthy, everything was so hard and why I felt so sick all the time. Accepting I was chronically ill was much better. I think it just takes a while for our minds to catch up with our situation. Being realistic about our situations is usually best, I think.

If you just have UC though, you may well go into remission one day. Then you could feel very differently than you do now. If I were you, I wouldn't resign yourself to being chronically ill indefintely just yet, though it may be sensible to accept that you'll be sick for a good while. Whether someone with IBD is chronically/permanently sick depends very much on the severity of the individual's disease and how they respond to different treatments.

You will almost certainly find that you come to terms with it eventually - a year is not so long on the scale of things. (I've been sick since childhood, and I'm now in my twenties. I've had digestive issues for over ten years.)

Other people's comments are a bit different. Sometimes the only socially acceptable thing is to pretend to be ok. Sometimes it's just not worth being honest (you might not want to share the details of bowel disease with random people anyway ). But with people you know well, you should be able to let them know how you really feel. You have to allow yourself to be ill. It's not wrong to admit to others you feel bad, even if it's not the reaction they're expecting. They'll have to learn to deal with some negative answers.

Even if you do end up always ill - it's not a death sentence. I think that's the important thing. You can be chronically ill and still be happy. You learn to live with symptoms, and after a while they don't seem so prominent anymore because you're so used to them they kind of fade into the background of your thoughts. That's been my experience. I have acute episodes where things my illness takes over, but day to day my symptoms take up less room in my head than they did when I first got really sick. When my digestive issues started, I went through a long adjustement period. I think I spent about two years coming to terms with it. This time would have been much shorter if I'd had a proper diagonsis so I could understand what was going on. It was a terrible time for me all round, which didn't help me any in coming to terms with having an embarrassing illness. If I'd had more support and insight into my situation, I think I would have reached the point of acceptance sooner and more easily.

 

[PhoenixBird]

Thank you, that was so very helpful! x

 

[Twiggy930]

Interesting thread. I have started to become aware that my son is thinking about this which surprised me as his health is relatively good at the moment. I think for him he is struggling with the fact he is generally feeling good but not perfect and is trying to come to terms with the fact that he may never feel exactly perfect. I will continue to follow this thread and hopefully gain some insight into how he might be feeling. Thank you so much for sharing your thoughts and feelings on this.

 

[PhoenixBird]

It is a really tough thing to get my head around. It's difficult to accept that I will never or at the moment, do not have the energy to do things that I want to do. The state of mind quandry is difficult because you don't want to depress yourself into thinking you'll always be sick and feeling unwell because you still want to get the most out of life. But at the same time, you want to console yourself realistically as to why you can't always operate at the same speed as others.

 

[Ihurt]

I have not even been dx with crohns, I went through some tests, but still have no answers. I still have to have a colonoscopy, but gastro wont do it right now since things were complicated after I had an MRE. ( I ended up with a nasty UTI that I have been trying to cure for the last month!).

Anyhow, I just wanted you to know you are not alone. I have MANY health issues, some that are so debilitating. I have IC which is a bladder disease that is one of the most painful things I have had to deal with. I also have fibromyalgia, Multiple chemcial sensitivities, heart mur mur, chronic pain, CFS, etc..along with terrible intestinal pain. I have been ill for the last 9 years so I know what it is like to go from being a very energetic fully functioning member of society to now, being disbaled with chronic pain and not able to work any longer. It is quite a blow, that is for sure. I will admit that I get depressed because of what my health has robbed me of. I guess we have to keep going, I mean these are the cards we were dealt, it is what it is. Just know you are not alone. I just pray that things will get better one day.

 

[CrohnsChicago]

I wonder about these things myself. I have only been diagnosed for about 6 mos now. When I am in a flare, I feel I am "always sick" and will never have a chance at feeling better. Any other day I consider myself "Just getting by" and "making the best of a shitty situation" (pun both intended and not intended) lol.

Some days you just have to fake it til you make it but there isn't a day that goes by where I am not thinking about the disease, even if I have my game face on. Some days I may feel great and for a split second I forget that I am ill. But when that unexpected cramp or other symptom creeps back, it makes me want to cry that I was ever foolish enough to think for a moment that I would be okay. In the back of my mind I am always worrying/wondering. I never really know how to talk to others about it and you can tell they are terribly confused and left speechless when I do speak even simply about it. So I don't talk about it much face to face with others. And I agree. People ask me how I'm doing...my default answer is just "fine (well), thanks". Because trying to explain how I really feel is just too much for folks to comprehend and I don't care to bother with it in public settings especially. Inside my head, my real response wants to be "if only you really knew...heck, sometimes I wish I knew...".

I honestly don't think I will ever get my head wrapped around crohn's. The uncertainty can easily turn into a fear monster for me thanks to my anxiety issues. So I just do my best to take advantage of my better days. It also really does help in the moment to lift my mood and help me to relax when I can find humor in the situation.

I talked to my counsellor about it but she really didn't understand that this feels like a permanent state of mind for me now. I am sick all the time. I will always think of myself as being sick all the time. I wonder, will this ever change, and how do all of you think of yourselves--as healthy when in remission/sometimes sick/always sick?

It's hard enough lying when people you barely know ask how you are: 'Oh, I'm okay', and then having a seperate more realistic answer for people you know better who actually know your situation. I've found myself having a knee-jerk thought to compliments like: 'Oh, you look good today, you're better then?' I find it always a depressing thought to think rather than say. 'No, actually I'll always be really sick, I'm just clearly putting on a brave face today'.

I just wonder how I will ever get my head around having this disease.

 

[PhoenixBird]

Thanks, CrohnsChicago. I also have had Generalised Anxiety disorder my whole life. I control it with Aropax and it's really a very small part of my life now that CBT has helped me a lot.

I agree, that it's hard when you're in a flare to see or remember life outside of it. I'm flaring now, have been for over a year without remission. I'm currently off work until I get surgery or get things under control enough to return. I love my job and I feel hopeless not being able to do something. I think it's this which makes me feel so helpless to this disease, because I can't do what I want to be able to do.

That said, this morning was a morning which began with a sprint to the bathroom and then an accident, and those days never turn into good mental health days.

 

[Jennifer]

When dealing with chronic health problems all we can really do is do our best to get better and take advantage of the times we feel well. During remission you wont feel sick. You can still get colds and flus but once those run their course you'll be back on your feet and ready to attack the moment. Even while in remission the possibility of getting sick again is something we have to accept. No reason to worry or fret over it, its just a fact in our lives. The possibility of having another health condition is also a fact of life. So even for many of us who deal with multiple chronic health problems there's a way to treat every single one of them. Do your best to get well or stable no matter how long it takes and live your life the way you want to live it. We all feel like we've been dealt a crappy hand but we can make the most of it. It doesn't mean we'll never be able to do what our hearts desire it sometimes just takes more time to get where we want to be.

 

[LondonSnow]

I know exactly what you mean, OP. I'm not a healthy man who's occasionally sick; I'm a sick man with a lot of days off feeling sick. I don't think we'll ever get back to that care-free state of mind we used to have. We might come to terms with it and carry on living and whatnot, but it'll never be like before.

 

[SarahBear]

I noticed that some of you are newly diagnosed. I promise, it will get easier as time goes on! I was diagnosed in 2008, so by some standards I'm still fairly new at this. I struggle with these things like you do, but not like I used to. You'll get used to your diagnosis with time, and eventually realize it does not define you. Yes, we're all chronically ill, and that's a big part of our lives - but it doesn't always seem like the biggest part.

Hugs to all of you! :ghug:

 

[Register]

I agree with SarahBear. Even though your disease may progress, you find ways around the parts which effect your life, possibly even the most. The problems may not be solved but at least they are controlled. But hopefully you will find a treatment which works for you which is more important. PheonixBird, I am sorry you are having problems though. I definitely think its OK to think of yourself as chronically ill. Being chronically ill is actually a fact, not an opinion. If you have trouble with urgency, could you perhaps plan your eating around when you go out? Its tiring but perhaps you will be able to go out.

 

[acheallova]

I'm fairly newly diagnosed and still trying to grasp the concept. My hubby says I'm my own worst patient ( since I'm in the healthcare field.) I know exactly what to tell my customers to put them at ease, but can't take the advice myself. I do hope it gets easier. I have absolute verifiable, clinical documentation but still.... I've just learned to live each day to the fullest, as if it is my last ( if i have the energy n ambition) and to take one day at a time. That's all we really can do. Life is too short to fret, wondering what the future may hold. If it were Gods will, we could b taken tomorrow accidentally, thus, take joy in what you are able to do and accomplishments you make. Muah- hugs-

 

[Magnolia soulangeana]

I have been struggling with similar thoughts. I am only recently diagnosed with Crohn's, but have struggled with depression and anxiety for over 15 years. Even when my depression has been well managed, I still feel like a depressed person with managed symptoms - not really a happy person. (Athough maybe some would argue that means I just have't managed my symptoms enough!)

However, when you have constant reminders of the fragility of your state: your meds, your menu choices, etc, it's hard to not incorporate some of your illness into your identity, regardless of how well you may be feeling. And when it is part of your identity, it's like a lens that you see your future through. Seeing your life stretch before you with more assurance of pain and suffering than happiness and health is overwhelming...and those may be your good days...your bad days you can't see anything at all besides the pain you are in. And it feels infinite and suffocating.

Is my brave face not also my real face? I'd like to think so: that I am a fighter if nothing else. At least it makes me feel a little better about wearing it.

I think therein lies the challenge: accepting the dichotomies of who we are. Sick, but strong. Angry, but not self-pitying. Scared, but brave. Sad, but hopeful.

When I feel consumed by one of the uglier emotions, I try to remember what else that says about me. What else I am because of it. And then I put my brave face on and just do my very best.

 

[Polaris]

I also understand how you feel. Although, I think right now I'm still in denial since I'm newly diagnosed (June of this year). I had a horrible flare at that time, but am somewhat in remission now (off meds), with the occasional symptoms depending on what I eat. I know another flare is probably inevitable, but until then I'm just trying to live each day to the fullest, and enjoy my pain free days. I realize it won't be this way forever though.

 

[Spooky1]

Magnolia you put things very well for some of us that try so hard to manage year after year. Everyone is different. But i have to confess i'm still hoping for cures and a chance to feel well. Amazingly, i find myself apologising to myself because i am ill and i just can't do things others do. So i just end up saying sorry to me, cos there's no one else here, and i just didn't get anything done. Even reading can be such hard work. the concentration and focus goes. Even if you do manage to do things, the focus seems to be lacking and things aren't done with the vitality and energy that a well person can do them. I feel guilty about that. I also feel defeated. this is why i think i find myself apologising to me. I would dearly love a cure.

You will of course, find hundreds of people around the world that feel as you do, at least we understand. We are far more likely to identify with you than those around you that don't have illness. We are here for you and each other. thats something, because half the time our medical professionals haven't had to live with anything like what we live with. they got nice career, and we'd like one!

 

[acheallova]

Yes Spooky, the support on here is absolutely wonderful. Don't know what i would do without my forum family but be depressed. We can all bond together, feel each others pain and offer assistance. As long as we continue to move forward with a positive attitude, a cure WILL be discovered, if not for us, then for future generations! Lets keep striving forward. Muah- hugs-

 

[FullM3lt]

I've been "chronically ill" for over 10 years. It gets easier to deal with as time passes.

Ages 18-22 I was completely asymptomatic. Dealing with a minor flare right now, but the worst part are the extra intestinal manifestations (diagnosed with costochondritis today).

I usually don't think about it. I just try to control what I can (scopes, meds, diet, exercise) and I ignore what I can't control. My recent scope revealed active disease, but I had no scar tissue, no polyps and my ileum tested negative for Crohns. One day at a time.

 

[Higbonzo]

It's hard enough lying when people you barely know ask how you are: 'Oh, I'm okay', and then having a seperate more realistic answer for people you know better who actually know your situation. I've found myself having a knee-jerk thought to compliments like: 'Oh, you look good today, you're better then?' I find it always a depressing thought to think rather than say. 'No, actually I'll always be really sick, I'm just clearly putting on a brave face today'.

I just wonder how I will ever get my head around having this disease.

Totally understood. I finally got to the point where I just say "thank you".

The reality for me is I put most of the pressure on myself. People don't know I am sick, and that is fine with me. Even if they do, there is not much they can do to make things better. Those that are close to you will understand that you will have your moments. Some days you will be fully engaged and participate in life fully, and other days not so much. I have had my disease so long that I have learned when to enter in an in depth discussion of my disease with a person, and when to go on as if I am fine. Remembering, in that persons mind, I am fine, so I hold nothing against them for there ignorance. In truth, we are all ignorant of the "ins and outs" of most peoples' lives around us.

As far as wrapping my head around my disease, I came to the conclusion early on that, "some of us must be sick, so that other can be healthy". Kinda falls into the philosophy, "we can't all be the same". That and learning to give in to the disease, not give up to the disease, but rather understanding there will be times when you just have to slow down, change your lifestyle, and give in to what will make the disease lesson it's grip on you. Believe me, this is "Easier said than Done." And takes a long time to figure out, but it works for me.

In the end, we all have good days and bad days. It is just a different measurement for those of us with chronic illnesses.

Peace and love....

 

[Spooky1]

Hig, imagine all those people that choose to be in the healthcare service! Yes, if people didn't suffer they couldn't reveal their caring nature. They often feel compassion, but i think fellow sufferers also feel compassion, probably a bit more than the care staff.

 

[Latte]

I am trying to come to terms with being chronically ill.

Prior to being diagnosed 2 weeks ago I had already been diagnosed with PCOS in 2000 and endometriois in 2009 both chronic diseases with no cure and now I have been diagnosed with my third one and it is just making me so upset.

I have been in chronic unexplained pain for years and years and whilst it probably was the endo a few years ago as it got better after surgery then pain that has returned is now more than likely Crohns pain I have just found out.

I got married in 2008 and my poor husband didnt even get a 12 month warranty out of me as within months my health deteriorated so much with pain. I ended up from being able to do 5k runs to not being able to walk without the use of a stick.

It turns out this was endometriosis as after I had it all removed I was so much better but my health and fitness levels never ever returned to how they were and within 12 months the pain came back again and I know now it is Crohns the pain I have now.

I am saddened that I will never get back to being able to do 3 hours of exercise a day or thinking nothing of going out to do a 5k. I was even building up to 10k before I became ill.

I am angry I never had my stomach problems looked at sooner as I just excepted that I had a 'delicate' stomach

I am upset that I know I will be restricted for the rest of my life by my illness

BUT I am relieved that I now have answers and hopefully I can try and battle through to enjoy life as much as I can

 

[scottsma]

My I.B.D nurse said,You can think of yourself as a sick person who's sometimes well,or a well person who's sometimes sick.Thankfully,the latter seems to be the norm for me.

 

[PhoenixBird]

I am trying to come to terms with being chronically ill.

Prior to being diagnosed 2 weeks ago I had already been diagnosed with PCOS in 2000 and endometriois in 2009 both chronic diseases with no cure and now I have been diagnosed with my third one and it is just making me so upset.

I have been in chronic unexplained pain for years and years and whilst it probably was the endo a few years ago as it got better after surgery then pain that has returned is now more than likely Crohns pain I have just found out.

I got married in 2008 and my poor husband didnt even get a 12 month warranty out of me as within months my health deteriorated so much with pain. I ended up from being able to do 5k runs to not being able to walk without the use of a stick.

It turns out this was endometriosis as after I had it all removed I was so much better but my health and fitness levels never ever returned to how they were and within 12 months the pain came back again and I know now it is Crohns the pain I have now.

I am saddened that I will never get back to being able to do 3 hours of exercise a day or thinking nothing of going out to do a 5k. I was even building up to 10k before I became ill.

I am angry I never had my stomach problems looked at sooner as I just excepted that I had a 'delicate' stomach

I am upset that I know I will be restricted for the rest of my life by my illness

BUT I am relieved that I now have answers and hopefully I can try and battle through to enjoy life as much as I can

That's really tough, but I'm glad you finally got a diagnosis. Then at least, you can be assured that you aren't going crazy or not understanding your symptoms. I have PCOS too. For almost the last 10 years my endocrinologist has been looking at me in silence for long periods of time at my appointments and saying "I just know that we haven't got to the bottom of you yet!" and last year when I was finally diagnosed with UC it was a sort of clarity even though I felt really scared and confused about it at the time.

Two weeks after my diagnosis last year I didn't even know what the disease was thanks to my specialist forgetting to give me an info packet they give all their patients. So 3 months later at my first outpatients appointment after hospital they finally gave it to me and I began to realise that what I had was serious. A year on, it's still settling in really. But I have lots of information now, and a year's worth of experience of the disease.

 

[PhoenixBird]

My I.B.D nurse said,You can think of yourself as a sick person who's sometimes well,or a well person who's sometimes sick.Thankfully,the latter seems to be the norm for me.

This is exactly why I started this thread. This is the connundrum I am talking about. It's difficult either way. I don't know how to accept that I'm sick most of the time without getting depressed that I'm not going to be able to do the things I want to do again.

 

[acheallova]

Oh my dear, unfortunately we are not "superwomen" even tho we wish to be. Our bodies dictate how much we are capable of doing. It's just Gods way of telling us to slow down and take a look around at what we do have and what we can accomplish. Take time to enjoy family, friends and loved ones. We won't be around forever and they need us as much as we need them. Muah- hugs-

 

[Lisa]

This is exactly why I started this thread. This is the connundrum I am talking about. It's difficult either way. I don't know how to accept that I'm sick most of the time without getting depressed that I'm not going to be able to do the things I want to do again.

First - although you may think this now - why couldn't you do things if you really wanted to? Yes, it may take time for the right medication to be found, and get a flare under control - but WHEN that is done (I don't like to use 'if' - power of positive thinking!).....there really shouldn't be any restrictions.

Personally, I have been through MANY ups and downs over the 30 plus years of being first diagnosed with UC, then Crohn's, then Crohns'-colitis.....despite the numerous hospital stays, all kinds of medications, complications etc these are just some of hte things I have done with my life -

Worked at least part time, been at the same job now for the past 10 years - I am a State Fire Marshal.....

Was a volunteer firefighter for about 20 YEARS!.....did everything from taking EMT class, to vehicle extrication, fighting structure fires, driving apparatus.....

Have owned horses for over 20 years - at times, they were my sanity - my previous job (8 years) was as a dispatcher either for police or fire/EMS...talk about a STRESSFUL job.....I would go to the barn and 'de-stress'.....would carry a roll of toilet paper with me just in case! lol

I am a home owner, a wife and a mother.....been scuba diving, traveled overseas multiple times.....and held positions in some fairly large organizations.....

If you can, try not to think of having a disease that is limiting you - but prove to the disease that it will NOT limit what you want to do!!!

 

[daisy98]

hey everyone. I'm new to this forum. I was diagnosed with Crohn's 8 months ago now. Sometimes I think I can handle this condition and other times I find it really difficult. I work in the health care field and spend so much of my life caring for others, but when it comes to something being wrong with me - that is what I struggle with. I suppose this is because I'm afraid as have generally been a healthy person and in the past I have cared for people with crohn's. So sometimes knowing too much is my worst enemy. I do try to keep positive, but finding it quite hard lately. My specialist wants to start me on Azathioprine - I'm a bit reluctant due to the side effects etc. Thoughts?

 

[Dan86]

Insight and advice from a 14 year crohnie

I totally understand how you feel. I was diagnosed with crohn's in 2000. The learning curve is a major one and it will take time to basically learn the way your stomach functions all over again. There have been so many times when everything was going good, i'm in remission and I get blindsided with some sort of complication associated with my crohn's. Despression goes hand in hand with chronic IBD and on many occasions I was about to lose my mind.

The most dissapointing thing for me was that when I was diagnosed, the doctors didn't really prepare me for what I was about to go through. They should have just been real about what my life was going to be like, just shedding SOME light on the harsh realities instead of giving me the impression that this will be simple by saying "you'll be just fine", "a few changes to your diet", "take these pills", "follow up with me next month" "and you'll be just fine". So it took me about a year to really grasp the concept of "im sick now".

But you CAN take pretty good control of things if you take the time to LEARN ABSOLUTELY EVERYTHING ABOUT THE DISEASE. I hate to sound like a doctor but change your diet, exercise, dont stress out, but the BIGGEST ONE in my opinion is to keep your mind occupied on something at all times hobbies, draw, videogames, boardgames, talk2friends, freestyle rap! it doesn't matter, whatever! I say this because this helps to defeat depression when your layed out in bed for weeks or months at a time. The last thing you need to be is bored with nothing to do because, from my experience, thats when you start thinking negative thoughts, you get sad and fall deeper into that "dark hole" An attitude I kinda took to is "You wont feel sick if you dont act sick" which was easier said than done .

But for me it was much more than "i'm sick", for me it was "i'm really fucked up". However; after losing 40 pounds in one month, almost dying from severe blood loss, PAIN!, forced to leaving 2 decent paying jobs(one of which I liked!), 2 leg infections that put me out of commission for a total of a year and a half, PAIN!, depression, opiate addiction, 2 six hour long surgeries, PAIN!, LITERALLY tens of thousands of pills, god knows how many "accidents", PAIN!, embarrassment and last but not least a permanent colostomy later... i can honestly tell you things do get better and I feel AWWWWWWWWWSOOOOOOOOOOOOOOME!!!(wwe the miz ) I cant say that im 100% but I remember the times when it was difficult to be at 50%.

After most of my large colon was removed, my colostomy created and rectum completely removed, i've been pain free and it feels like i'm able to breath again. This relief from pain feels so...new to me, im waiting for the pain to start but its not happening haha i fucking love it!! Now im not trying to give the impression that i've had it rough, well it hasnt been easy, but i've spoken with other people and i was shocked at what some of them have been through and amazed at how strong they were. I struggled through my misery but these people were amazing to me because after all their hardships, which made mine look like a papercut, they were unbelievably positive. I soon realized that, other than getting a new perspective on things, there were some more upsides to living with crohn's. I discovered my interest in the human body, now I love to workout and i'v learned about nutrition. I now have broad knowledge of different kinds of medicine out there like antibiotics and corticosteroids including how they work. I'v met enough doctors and nurses in my time to learn to REALLY appreciate the GOOD ones when compared to all bad ones i'v had.

I honestly didn't expect to write all this, I just shocked myself haha. My first time writing anything relating to my experience with crohn's and I gotta admit I like it. I HATE talking about it in person unless its with someone who has it or REALLY understands. I absolutely hate it when a barrage or people ask me at a time like when you go back to school or work and family get togethers explaining the exact same things over and over and over and over and over but you cant say anything because they just care about you lol.