Poor Support System

[augustaSN]

My recent flare up is one of the worse I have had in my life. I am managing to hobble through grad school, but I am alienating my peers, and I have even lost one of my closest friends, who "does not want to be held responsible for me." The others merely avoid me/ do not invite me to events.

I feel like I am a burden on everyone I meet, and my choices are to be honest and burden/scare people, or lie about how sick I am, and continue to be lonely. I do not have a supportive family.

There are no local support groups, I have looked. I found a therapist, but it is not working. How do I stop feeling so trapped and isolated, without losing what acquaintances I have left?

 

[Honey]

Hi there,
Remember people can not see your struggles with your illness, or feel your pain! Work on your self esteem ,know your mind and make choices about who you keep as good friends.I dropped some people who had negative vibes, totally walking over my feelings when I was really ill viz fairweather friends. Real friends share your good and bad times. Keep quiet when you know someone is really not interested!!! That way you will keep your peace of mind and not feel so upset. Remember there are some caring people out there too. I have been pleasantly surprised by the unexpected call at my door viz a lady I meet out walking her dog
who came to ask if I was alright as she had not seen me for a while!!! I call that 'God sending an Angel '. The illness too also makes you feel isolated as it I not like a broken leg. You often suffer in silence. I hope your meds keep it reasonably under control. Find some interests and enjoy them. I hope you feel better soon. Let me know how you are.:bigwave:

 

[lizbeth]

Hi there and a warm welcome to the forum ,

I'm really sorry your 'friends' are behaving like this and leaving you feeling alienated and miserable . I would say that now you have joined us that you have now acquired many new friends who do completely understand how you feel, we have all had troubles along the way of our IBD journeys. You can talk to us about anything at all so use us as your shoulder to lean on and that way you won't have to 'burden' you friends, it is sad though that they can't support you more, have you been able to talk to any of them about your feelings? Is there any one person that might be more interested? You mention about still being in grad school so I was wondering if there was anyone maybe a teacher or member of staff that you could discuss how you feel, they might then be able to put you touch with a suitable support service? I'm sorry that you don't have a supportive family .

I really hope that you get some happiness soon, please continue to talk with us and feel free to discuss anything at all, we will be more than happy to help, for now , take care and look after yourself, sending you best wishes and big hugs. :ghug:

 

[Trysha]

Hi Augusta
So sorry to hear of your sad feelings.
I agree with the two posts above.
It is so difficult to endure the crohn's flares but people do not take the time to understand others pain and discomfort.
If your present therapist is not helpful to you find another.
Fill up your time with things you feel able to do, distraction can help with coping.
Do you enjoy soft music, it is something I have found helpful while trying to cope.
Do you have any church groups you could join or a minister you could talk to?
You will certainly have lots of understanding friends on this forum.
Feel better soon
Hugs and best wishes
Trysha

 

[Mistybear]

Hi Augusta, sorry your having a rough time! This disease sucks any way you look at it....do you have a sister or a close female relative that you can talk to? I know about loosing friends too, that why I choose my dogs(I know, sounds crazy) but they do not judge. I have a sister with MS so she totally gets it. Hope your recent flare is getting under control, and a big congrats to you on grad school. Huge accomplishment, you should be proud! I am a Ga girl also!

 

[Lustforlife]

Another Georgian checking in - sending you my support. I hope you'll stick around the forum for some time - I think you'll really find some of the support and understanding that you've been missing in your life.

I believe hthompson631 is also living in Augusta, though have not seen her in a few weeks. This will tag her.

 

[augustaSN]

thank you all so much! This forum has been so helpful, it is just so sad, learning that fellow nursing students are the least sympathetic people.

I wish I had a supportive family, but even though I was an inpatient for the second time in my life a couple weeks ago, none of my family/friends cared to call to see how I was doing, any of the 5 days i was in the hospital.

 

[Honey]

Hi there,
Sorry to hear you do not have family support and friends have let you down. It hurts, I know as I have experienced that too. People can sometimes be very wrapped up in all they are doing ,and not consider those who are just managing to do the basics because of Crohns. Do not hold on to the hurt but find your own happy space and move on. I love listening to Classical music when I need to relax or following one of my hobbies. You just need one good person to listen to you who understands what a horrible, debilitating illness Crohns is. Use this forum to vent your feelings as that will help. Let me know how you are doing and I will get back to you. It is good to talk!!!!! :rosette1:

 

[nogutsnoglory]

Please know this is a support group that is accessible 24 hours a day. There must be support groups in Georgia, how far is the closest one? Maybe you can goto a meeting? Even if not as a regular. CCFA also has a Crohn's hotline to talk to a specialist about the disease or what may be available in your area.

888-MY-GUT-PAIN

 

[augustaSN]

Thank you, guys. It sucks! i mean, i am in NURSING school, and people here are blaming me for my illness, calling me a "mess," and avoiding me like the plague. I have never encountered people so cruel. There is no local support group, and the school counselor has not been helpful.

Having no friends or family around me is hard.

 

[Honey]

Hi there,
Find a strength in yourself to cope with your illness ,and do not let people's perception of that illness upset you. You can be very disappointed if you look to some people to support you: sometimes , they just can not see beyond how well you look!! Your experience, if used positively, will make you a more compassionate nurse as patients need your empathy too!!! As I said before, find some interests that help you relax when you can. Take good care of yourself. Let me know how you are.

 

[augustaSN]

Thank you. and I know this will make me a more compassionate nurse--it already has--but sometimes it is hard to see that when you are suffering.

One thing that bothers me, that i can't seem to get over, is one of my NURSING classmates said this to me when I received criminally bad care at the ER for a bowel obstruction (and 10/10 pain and potential peritonitis): "it is your fault that they provided bad care. If you were unhappy you should have just walked out. Dont blame them for your problems and burn bridges"

My feelings were ameliorated somewhat when the ER director apologized and refunded the cost of care, but when i found out she requested MY emergency room for her residency next semester, it all came back. That nurses can be this cruel upsets and offends me, and I know she will get in trouble for it eventually, but how many people will she hurt (or kill) before that happens?!

 

[Honey]

Hi there,
I hope you have had a good day. Take good care of yourself and try to brush off people's thoughtless or ill informed remarks! Rise above that and move on, keeping your own counsel. It is sometimes wiser to listen, and not give others ammunition. Remember, you have enough to deal with in living with a serious illness. You are important , so protect yourself and look after your health. It is enough. Best wishes.