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Crohn's Disease Forum » Support Forum » Mental Health Support » How do you move on with your life and accept diagnosis?


View Poll Results: Living with Crohns, do you consider yourself functional?
less than 25% of the time 1 7.69%
25-50% of the time 1 7.69%
50-75% of the time 7 53.85%
75-100% of the time 4 30.77%
Voters: 13. You may not vote on this poll

09-21-2015, 06:06 PM   #1
Almondmilk
 
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How do you move on with your life and accept diagnosis?

How long did it take for people here to accept the diagnosis of crohns?

I was diagnosed a year ago, severe case of crohn's disease. My brother has had crohn's disease for the last five years. He never achieved remission, he is in a daily/constant struggle. He is severely disabled under the care of my older parents, it's a large tension in the family. Always been very hard for me to accept his diagnosis, accept the way it has changed the family. Here I am, now I have the same disease as him. I have been obsessed with going a different route from him, I spent 4 months on bedrest when I first was diagnosed, but Humira brought me into remission very quickly.

My obsession with being ok, and living my life has left me in a difficult spot. I think I have spent so much time telling people that crohns is "no big deal" that it's hard for me to accept that this is serious. I am beginning medication for chronic migraines, those are probably a result of Humira or maybe just the disease itself? I am doing a follow up double scope next week. In a lot of ways it is very shocking to me that I have to do so many doctors appointments every week. I wouldn't wish the frustration of pharmacies, (rite aid and acreedo), delivered medication, doctors offices, and colonoscopy preps on anyone.

This month I quit smoking, which was the last thing I held onto from before I was sick. It made me feel young, and healthy. Connected to my friends. I could always feel like, "well I might be sick, but I'm not that sick, because I still smoke cigarettes". Quit drinking, half the time I puke from one drink anyways.

I can't really believe this is me. How can I relate to anyone? Who would want to be around a chronically ill person? The more I'm moving forward in my life, the more lost I am feeling. I feel like a freak, I'm scared and so embarrassed to tell people my illness. Both because crohn's is not particularly nice, but also I do not want to be the sick person.

I am 23 years old, finishing my last semester of my BFA. I live on the west coast, my family is in the midwest. I just moved in with my boyfriend, and we're planning to move to NYC in January after I'm out of school. I want to be a normal person, but I don't know if that is possible. My brother has never been able to achieve remission, and even though I did, I still struggle with side effects and so much fatigue.

How do people hold full time jobs? I have doctors appointments so frequently, and I'm sick so often! How do you relate to your friends? How do you filter your words with friends? I don't want to be -the- sick person. I resent myself so much for putting this all on my boyfriend, why would he want to be with me?

Sorry so much information. I'm really interested in people with crohns who are able to be functional and lead busy lives. How do you handle it? How do you relate to other people? How do you accept yourself?
09-21-2015, 08:11 PM   #2
teeny5
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I am sorry you are having a hard time. When I was very ill and newly diagnosed I felt like a burden to my husband and wondered the same...how could he still be with me after all this? I have learned to let that go...he's with me and I am with him. Don't question it, just feel lucky you found someone who truly cares for you.

I was not functional for a couple of years meaning I couldn't work, was barely eating, slept most of the day, hair falling out, etc., etc. I eventually got a medication that helped put me into remission. I feel lucky I am in remission, but also can't help but wonder when I will get sick again. Sometimes I feel like a ticking time bomb, just waiting for the next flare.

As for friends...I only have a few close ones that I talk to about the disease. The other ones might know I have Crohn's, they might not. But in general I don't share it with people. First because it is none of their business, second because I hate drawing attention to myself, and third I don't like it when I feel like people feel sorry for me. If I am out and I can't eat something I just say that I either don't like it or it upsets my stomach...most people don't question that, everyone has had tummy issues at some point.

I have a very busy job. I have to watch it and not push myself too hard. My boss does know I have the disease and knows that if I tell her I need to leave because I am not feeling well that I would only do that if I really needed to. There are some days where I go home and sleep for hours. I know for my body I have to listen to that. When I am that tired it means my body is run down and i need to give in and sleep.

It has taken me along time to accept the disease and I do still have days that I am bitter about it, but I know that I have it and it's not going away so all I can do is make the best of it. I have reached the point of refusing to let the disease ruin my life. Even if I was basically bed ridden my husband and I would find fun stuff to do like movie night, video game night, etc. This forum helps me a lot to relate to others, try to help where I can, learn about the disease, and find support when I need it the most.

I hope you feel better soon and find your own way to be able to accept yourself and the disease. We were all dealt the crap hand, but it could always be worse...
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