Ok, so I had Ulcerative Colitis when I was 12. No one I knew had any idea what it was or how it would affect my life. My parents sold their custom built dream home and went into major debt to pay off all my medical bills and give me the oppurtunity of a semi normal life. Throughout the years, I have tried desperately to help people to understand what is wrong with me and it often seems like this is one of those illnesses that, unless you have it, you will never understand completely. Telling people how tired I am or how blah I feel always triggers the responses, "stop being lazy. . ." "go exercise, run around, be active. . ." "everyone gets tired. . ." "you should sleep more. . ." "stop worrying so much, you'll make yourself sick. . ", I could go on forever. What I'm wondering is how do you deal with people not being able to understand what you go through on a daily basis. Some days (like today) I just feel like curling up in the fetal position and crying my eyes out. Nothing is wrong really, although I feel like everything is. I tried talking to my boyfriend about how I'm feeling and he just got annoyed with me -.- *sigh* My mom thinks I'm depressed, but, although I have never been diagnosed with depression, I refuse to find out. I don't want to take anti-depressants or anti-anxiety medicines because I'm afraid I won't be me anymore or I'll become too dependent on them. . .I don't know, I guess I'm just kind of venting on here. I'll be surprised if I get any response that doesn't tell me I should really consider seeing someone. . .lol

Hi Alex,
I'm sorry that you're feeling so down and you won't be surprised by my response because I would suggest... seeing someone! I know there are many crappy therapists out there and I have seen many useless ones but don't stop trying to find someone who can help you. You don't need a diagnosis of clinical depression to benefit from therapy. Is there someone where you live who specializes in mental health and chronic disease or medical trauma? If so, I would start there. You don't have to go on meds if you don't want to, but if you do you can always stop when you feel better or if you don't like the way they make you feel?
From my own experience, my brother had a serious near fatal illness in his early twenties and with very serious consequences and a brutal recovery. One of the most positive steps he took was to see a psychiatrist who specializes in medical trauma . It literally turned him around mentally and he was able to go on with his life and is very successful now on all fronts. He still sees her when he feels the need and he was on anti depressants for a while.
Do what you need to do to feel better. You have been through a lot so there's nothing wrong with "seeing someone".
Btw, I saw the same therapist as my brother recently and it did not work out at all. But I am looking for someone else because I can't function feeling like junk all of the time. So, keep searching.

Basically, you can't explain to your friends. You are right that people who have not experienced IBD cannot understand what it is like. Just like your mom cannot make you understand what it is like to go through labor. That does not mean other people are selfish or uncaring. It just means that they lack experience.

I choose to just give them the benefit of the doubt and forgive them. I do not try to get them to understand, but just tell them I have a chronic illness that I am dealing with the best I can.

I do agree with your mom that you are depressed. It is up to you whether you want treatment or not. Seeing your doctor about it does not mean you are automatically put on antidepressants. However, if you see your primary doctor, he probably will prescribe antidepressants. That is because that is all he is qualified to do. He can refer you to a psychologist for talk therapy if you are open to it.

There are options for you. You can choose to struggle on your own with feelings that are overwhelming you. How's that working for you?

You can try antidepressants and see how they work. You know, you don't have to stay on them if you think they are changing your personality (most modern antidepressants do not do that). The days of being in a drugged stupor are long gone. Plus, if they do not help, there are different ones to try. These are not "happy pills" that will turn you into a "Stepford" child. They are mostly to get your brain from circling the drain and focusing over and over again on the crap things in your life.

Sometimes talking to a therapist helps you gain insight and learn ways to cope with feelings you are finding intrusive and overwhelming. Sometimes not. Maybe just venting here will be enough for you.

The main thing is that if you are feeling that depression and anxiety are affecting your ability to enjoy the things you used to enjoy, then you owe it to yourself to get serious about dealing with it. There are many here who have been where you are and there are multiple ways to manage this. Ignoring it is not one of them.

Jan

Sometimes, I do curl up into a fetal position and sob. . .and I'm 40.

When you appear whole on the outside, people expect you are whole on the inside. This is not true.

If you need to cry, by all means cry! If you need to talk, we're here for you, anytime.

If I had an arm amputated, I feel people would be much more understanding. But my scars are all internal, and it seems only those with internal scars can sympathize with how painful that is.

Hang in there!

I agree with Dog and Jan on this one. I have found through my years with UC, no healthy person ever understood how debilitating the disease is and how it can severely limit your life choices. I swore at times they thought it is a disease you invent in your head.

In some ways I feel fortunate that my dad had UC (although not for his sake), as he is the only one who truly understood my pain and plight and still does after his having ostomy surgery over 20 years ago. My husband runs a close second after living with me for 23 years with a chronic illness.

I agree that a therapist may be in order. At 49, I have sobbed more times than I can count this year after having a pre-cancer scare prior to surgery and multiple issues since surgery.
I am not ashamed to admit it. I am also taking xanax when needed as the trauma of all I have been through recently has been a lot to deal with and I consider myself someone who has a very strong constitution.

I recently requested the name of a therapist who also deals with people who have experienced chronic illness and medical trauma as the burden from my illness and resulting surgeries is a lot for my immediate family to continue to take on. I think you may find just having someone to talk your feeling out with may really help those feelings you are experiencing which are very normal considering what you have been through.

I am really sorry, Alexis. You are right, as is Jan. People (most of them) don't intend to be uncaring or not understanding, but in reality, they won't understand. Like Dog says, if you were missing an arm, people would get it. But although you're missing your guts, people don't see those scars and therefore the world of chronic bowel disease is misunderstood.

I am on antidepressants, and I thank God someone convinced me to try them. It made a difference in how much I could handle. But that's not to say you should if you don't feel comfortable with that choice. But, you could try and then stop if you feel you become someone you don't want to be.

I am MORE of myself now because I have the tools (due to talk therapy, antidepressants and this site and others) to deal with the massive load this disease can bring with it. When I was struggling without the meds, that is when I truly was not the Tammy I ever was or wanted to be. But again, it is your decision. There are some herbal remedies for depression or anxiety that you could try if you talk to your GI and you both agree it is safe? Bottom line-whatever gets YOU through the day is what is right for your life.

I still curl up and when I am alone with my dog, I cry and sob and scream (that's only when my poor doggie, Temperance, is NOT there) and let it out. It is very cathartic. I have that release that I owe it to myself to feel.

You are always welcome here.

Hi Alexis,
Ok, so I am the one who is not going to send you to see someone if you don't want to (I never did) and I am not going to suggest drugs (although I honestly believe that if you had a broken leg, you would be a fool to refuse a cast)...I am the 'tough if out' type that grew up with this disease and all of the guilt of distroying my parents' lives...no, people do not understand although I have on occasions, when someone that I know is going through a particularly bad stomach flu and moaning in the toilet, screaming in pain, have said to them,' you know what you are feeling? Multiply it by 100 and then live with it for 10 yrs!' that usually gets their attention and I usually get a, 'ok, now I get it...I am sorry.' and then the following week they forget all about it and tell me to get up off of my lazy arse.
No one will ever really understand, other than us, so come to us for support and blow off the others...consider them babies that you are trying to explain nuclear fission to...they just can not get it...not equipped.
So cry, as Dog says, of scream or eat ice cream until you puke (my personal favoirte although I am trying pistacios at the moment) and go for a walk if you can, it helps. Or call your best friend and laugh. Or finger paint...Doesn't matter what you do as long as it makes you feel good or at least better...
I did cut off the people who make me feel bad or just don't care but for all of the goodhearted souls who have never had raging stomach flu and continue to act as if I am just lazy...I am waiting for them to get food poisioning
Sharon

I just don't tell people. If someone asked I give them the dumbed down PG version of what has happened to me and I move on. I'm very much a tough it out kind of person as well. Before I got sick I was the kind of person who really cared what people thought. Now, I don't. I have finally figured out how to put me first. To some people I may seem flaky at times but o well. If I'm not feeling well I do exactly what I want and what's best for me. If that means I don't go t volleyball practice a couple times or I miss a frisbee game, or even class, o well. Do what's best for you and don't waste your time telling the people who don't understand things that they can't understand. I am thinking about seeing someone at the moment for the sake of my relationship with my fiancé. He's been there from the beginng and he does understand but the situation has put to much stress on us and the relationship and we have to work through that. Do what you feel is right. I too am not willing to go on long term ain't depressants but I will throw down a Xanax if I need it. Good luck! Keep fighting!
Sara

Alexis,
I forgot to add...sometimes depression is not in the mind but in the body...you could be suffering from deficiencies...Vit B's and Iron are biggies with all of us and both of those can lead to tiredness, the blues, lack of desire and energy etc...not to mention magnisium and all of the other trace minerals that people who 'go' as often as we do can loose in the bowl...you might want to get yourself onto a pharmacutical grade woman's multi with extra iron and B's and you may just see a big improvement in no time.
Sharon

Just so y'all know, I am kind of the same person. Never been to therapy, never been on antidepressants. The only Xanax I ever had was to try to sleep on a plane (didn't work). But, being in health care, I've seen most of what you guys talk about, and I've seen that these treatments work. My husband developed panic attacks and was kicking himself all over the place because it just wasn't "manly" to be weak in that way. Well, sometimes your body plays by its own rules and while nobody wants to be on this stuff long term, most of us should be willing to deal with the short term stuff.

I feel like I dodged a bullet or something because I never seemed to get that PSTD, down in the dumps reaction with my flares or my surgery. Maybe it is just how I'm wired. Regardless, I consider myself very lucky, since so many wind up as the walking wounded.

My husband has been with me also from the beginning, when I was 15. While always sympathetic, I could tell he was tired of hearing of it. Then, after being together 30 years, HE was diagnosed with UC! At that time, he said, "NOW I finally understand what you had gone through all those years. This is intolerable!" While I was quite unhappy for him to get UC, he at least had someone who "got it." Now that my son has it too, it is sort of a family affair, and we get to joke about it together. So, we have come full circle so that now sympathy is not needed, just humor and understanding. Of course, everyone is in remission, so we can joke...

So, take care of your depression, drugs or no drugs, therapy or no therapy. I think places like this are great therapy. Just do not pretend it is not there. That is how it can grow and take over.

Jan

I was sick with severe UC for over 2 years prior to surgery. Life as we all know, was fairly poor in that period of time. I had surgery and things immediately improved. I had a very easy recovery, got my life back fairly quickly, and was so grateful to be hiking and traveling abroad again. However, six months into my recovery I couldn't sleep and I found myself uncontrollably weepy. Yep, I had depression. My doctor said it was most likely a culmination of all that I had been through.

I gladly took the AD that was prescribed and in about a couple of days I was seeing improvement. I was still me but without the sadness and dark cloud. I wasn't super happy...that's not how ADs work.

I had to stay on them for 4 years. She calculated the years of my illness coupled with the year of recovery and said it would take about that long to regain my serotonin levels. I've been off ADs for over 7 years and have never gone back to that place.

That's my 2 cents. The way I see it, I had gone through enough and didn't need to act as if I could handle it or take the tough gal approach. I had my physical health and I really wanted my mental health back.

Sue

Iv been thinking about it and I can honestly say that with each and evey 9 of my surgeries, I have lost a part of who I was. It ends up being replaced with a less patient, more blunt, bi**ch. I become less and less shy and more and more bold with how I interact with people. It's strange, In a way I care less I think. I'm not saying its a good thing but it happens.

I can totally relate to what you are going through, I started therapy this week and she did make sense she said it's very important to listen to your body and not to listen to the people who says hey you look really healthy. She also convinced me I am not crazy just very sick. I have to see my oncologist today and I am so nervous as there is talk about stopping treatment as I am getting so sick with the chemo and issues with dehydration and vomiting and I think they might want to do the takedown but as I nearly died with the first opp I wanted to get a lot stronger before I had it done.People do not understand what we go through and I have rectal cancer but I seem to have all the systems what you guys go through so I can relate to what your saying. My doctor told me it wouldn't be easy but I didn't expect it to be quite so tuff.
If I was you I would go to therapy as it is someone who you can vent to and they don't judge you as the normal healthy friends do.

Thank you all for all of your advice, words of encouragement, and recommendations. I really do appreciate it a lot. I spent the entire night jut crying for no reason other than I had too. I swear I feel like I belong in a mental house. As I continue to research and hear from others about what they go through, I am happy to see that I'm not alone like I've thought for the last 13 years. I think that once I start working again and get some insurance, the first thing I'll do is look into therapists. I realize that me trying to pretend that nothing is wrong is hurting me a lot more than it's helping and it's also putting stress on my relationships with other people. Even though I no longer have UC and unless I'm in a bathing suit, no would ever think that I've had major organs removed, I can still say that I AM sick, and it's not something that will ever just "go away". I know that people don't say things to be hurtful or anything, but hearing "you worry too much" or "stop stressing" is my biggest pet peeve. If I could really just stop and turn it off like a light switch, I would have done that years ago. I hate stressing out and worrying about things that either don't affect me directly or things that I have no control over anyways.

Well, I guess I just went off on yet another tangent. lol I just have so much to say, and even though I've never met any of y'all, I feel like y'all understand me.

Anyways, thanks again. It means the world to me .

Sounds like you have your head on strait and know exactly who you are and what you need...That is the start...crying is very good expecially when you are crying out of relief after finding out that you are not alone...there are litterally hundreds of us out here who understand you and are ready to help any way that we can.
Its funny but I saw my nurologist today and asked him about PTSD, anxiety, O/C disorder (bulima for me), depression or stress and treatments...he looked at me and told me that I looked great (thanks, I needed that!) and that he did not believe in psycologists, shrinks, anti-depressers etc! He told me that I was a healthy, strong woman who had 'normal' problems and stresses and that drugs were not the answer...he was happy to prescribe advil for my aches, my anti-convulsive for my epilepsy, and an emergency script for valium if ever needed! No prozac or zantax or anything else and certainly no refferal to a shrink! But he did suggest that I start drinking verbena tea at night!
So, it isn't me, it is France!
Sharon