How do you not feel guilty when you can't function an... - ABDA

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How do you not feel guilty when you can't function and people do not understand?

Theresa40 profile image
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Theresa40
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Sylvia22422 profile image
Sylvia22422

I really wish I knew the answer to this one. I am finding it hard to even try to explain how I am feeling.

I'm having a lot of trouble even getting my husband to understand the amount of pain and discomfort I am in.

I am hoping to someday be able to find a way to convey things in a manner that people (hubby included) will understand.

Donnamarie profile image
Donnamarie in reply to Sylvia22422

Sylvia,

I really wished I could help you with this question. You have to try not to feel guilty about how you are feeling it will only make your stress levels worse and the flares worse. When I first got diagnosed I felt guilty and then I started telling myself "it is what it is." And there is nothing I can do to change it.. I really hope and pray this helps you with something.. Take care and be well. Donna

Sylvia22422 profile image
Sylvia22422 in reply to Donnamarie

Donna,

I am newly diagnosed. I was diagnosed just 3 weeks ago but like many, I have been dealing with the symptoms for a long time.

May I ask what symptoms you have, what treatments you are using, and any holistic treatments you may use?

I really like my rheumatologist as a person, but I wonder sometimes if he knows enough about behcets to help me.

I have so many symptoms that I'm being told could be caused by the bd and when I bring then up with him he refers me to my normal physician. Is this normal??

Sorry for the billion questions!!

Thanks,

Sylvia

Donnamarie profile image
Donnamarie in reply to Sylvia22422

Sylvia,

I have had symptoms for 6 years that I am aware of.

It started with ulcers in my mouth,skin and female areas then moved into eye problems and painful joints. I have been on different regimens of medication. I was officially ( on paper) diagnosed in January. I am now on humira and leflunomide. So far so good. I do take prednisone pills and eye drops as needed. If your rheumatologist is sending you back to your primary care doctor then he probably is not familiar with BD you may need to find another doc. I forgot to mention that I have terrible headaches caused by the BD. Where do you live? There is a website called the American Behcet's Disease Association join that it is very helpful and you can find docs in your area.. I guess you probably already know this since you are on here. Lol.. Feel free to ask anything I would be more than happy to help if I can..

Donna

Also you can meet a lot of people on Facebook also. Pretty good support group.

Theresa40 profile image
Theresa40 in reply to Sylvia22422

Unfortunately, my husband could not handle the stress anymore. We are divorcing. We are friends. It was more than bc, but it was a lot.

alwazalady profile image
alwazalady in reply to Sylvia22422

It is very difficult because we don't look ill. I guess the best advice is to just concentrate on you in a positive way and to not allow someone else's limited understanding of what we feel, and what we are going through to affect us. You don't need the stress...

gundy03130 profile image
gundy03130

There is no easy answer for this one. Those of us going through this disease understand. Our loved ones have an idea of what we go through. Then there's those whom we are not close to who will never understand. For me, the best way is to ignore those and separate myself from those who don't understand. It might seem drastic, but it's what I need to do to save myself. I don't need to have any guilt with this disease, it's already taken enough from me. I certainly don't need to feel guilt over someone not understanding. As for support, I lean to my fellow BD'ers, my friends with Lupus, and my family.

smcelgunn profile image
smcelgunn

I am so sorry that your friends and loved ones don't understand. It's very hard... but you can't let them stress you out, it will only make you sicker. I have lost many of my dear friends that I've had for years because they just didn't understand that I was very sick with this disease! BUT... I've made hundreds of new friends through support sites like this. My new friends understand because they are living the same life I am... fighting the battle of Behcet's Disease! Please know we are here for you at this time.

Sandy

Theresa40 profile image
Theresa40 in reply to smcelgunn

How have you made friends with those who understand? My life has completely changed in about a year.

Janieg510 profile image
Janieg510

Theresa, I hear you. Maybe you and I both can find that Facebook group someone mentioned and we can make internet friends at least. Some people just aren't able to listen to someone talk about their medical problems, especially if they don't have problems themselves. And it frustrates people not to be able to "fix" us. They want us to just "pick ourselves up with our bootstraps" so to speak and get over it. But that's not going to happen so we have to love ourselves. I just recently joined these groups and plan to get a few books from Amazon that have been mentioned. I think our best bet is to take control of our health and read everything we can find, and keep using these forums. Good luck.

beralu profile image
beralu

in the begining i could hide the pain very well, i didnt look sick so there for i tried not to act sick.well it finally caught up with me. i became full blown 2013. Imean everything from central nervous system to anerisums im sure thats not spelled right. but anyway deep vain thrombossis.heart problems,trouble with balalance.had to have a port placed in because my veins where in flammed and they would calaps everytime the nurses tried to to an iv.and also the gastro, dierrea, ulcers from mouth to stomach.and eye ulcers and eye surgery.I lost all of my friends.also could not go out for a while because i also had hypogamagloblinaniemia.with someone could sneeze on me and i would end up in the hostpital. and that did happen, to many times.My husband stayed by my side and is still by my side and God. I still can draw and paint, and write poetry,yes i use word speller.But most of all ive learned that i still have my life, material things dont seem to matter as much. but when i can wake up and see that blue shy,thank you lord it my not be much but to me life says it all