Parents Just Don't Understand

[carolyn386]

I feel the urge to rant and I'm very glad there's a space for it!

I'm sure this isn't just parents, but I hate that people in general are so quick to assume depression and not anything else. I am not depressed, I am not anxious. I am in pain. I am exhausted. I am pissed off that no one sees that something's wrong with me! GRRR! Why does something that they can't see always have to be "in your head". I hate that I am not being believed. Doctors are bad enough, but your family is supposed to love and support you by listening and not discounting you. I am the one who lives in my body and I know that it's not right. It just makes me feel so discouraged when others can't accept that or help me to figure out what is wrong.

What are others' experiences with things like this??

[pretty]

Honey, we are right there with you. Even when you get older it is this way. They only thing that helps is the confidence in yourself that will help you persevere in spite of other people's reactions. I swear I am constantly finding new ways to motivate myself against what sometimes feels like overwhelming obstacles. The evidence, however, supports us.... it's just hard to explain to people that it takes an average of 15 years to get a proper diagnosis of endo. This is the tip of the iceberg you will find, as even when you have the diagnosis, there are just so many related-yet-hard-to-explain symptoms that go along with the disease that many of us end up seeing many specialists (gastro, gyno, uro, etc... not to mention counselers and therapists lol) that are all working (sometimes against each other!) on what ends up being endo anyway.

Here's the only advice I can give: KNOW YOURSELF. it's ok to feel awful and hopeless too. but YOU are the AUTHORITY and don't let anyone talk you out of that. I've found the best response from doctors is when I research thoroughly enough to really talk things out with my doctors. you have to believe yourself. it's awful but actually it really does build character lol.

The other thing, is places like this board, will give you the 'backup' that you need when times are tough. The women on this board routinely save me from myself.... love them!

[Tara]

Oh my don`t give up on yourself, you are on the right track, you know yourself and you know that something is wrong, and don`t give up till someone listens to you.

I once went on antidepressants just to prove to the doctor who thought that was the problem (and I knew I wasn`t depressed) that I was right, I ended up in the hospital feeling like I was jumping out of my skin. But I did get the point accross - This is not the right thing to do by the way....

I also have a co-worker who keeps on telling me to just have another baby, as that would cure me.....ugh....What does he know, he is a guy and not a doctor. Almost everone has an opinion on how to help and most of the time they are just blowing warm air.....

So hang in there and lean on those around you who are supportive, and there is always all of us. Sending you warm hugs to feel better.

[Karen]

I kept most of my family in the dark about things for quite a while (they live far, far away so it was easy), but once I came clean, one thing that helped was for them to see the pain log I was keeping track of (www.reliefinsite.com). I think that kind of hit home for them that I was in some pretty serious pain every day, and it was also a pretty useful tool for my doc AND for me to see progress (or lack of). I also remember telling my sister that for the first 5 months, I could count on one hand the number of days I DIDN'T break down into tears because of the pain, and that's kind of when it hit home for her. I know we're supposed to act tough and everything and just suck it up and move on, but sometimes it helps to let others know how much we hurt so we can get that compassion and help.

The next time one of them has a headache/cold/etc, ask them how happy they'd be if they felt like that every day. Put it into perspective for them. NONE of us like feeling like crap, there's no reward that we get for being ill, there's no pay-off to fake it. But unless someone goes through it themselves, it's really hard to comprehend that. I know I'm certainly a more compassionate person with endo than I was without.

[nichole262]

I completely agree, I have always been compassionate but this gives me a whole new perspective on pain and pain management. Being a nurse it kills me to see that some of my coworkers dont give a patient something for pain the entire shift!! when I ask the patient if they are having pain they say yes but no one asked if they wanted anything so they would only get the med if the nurse asked which they dont! UGHHHH I mean they are sitting and suffering in silence. Often what I used to do, but I say to myself now forget it if I'm sore I'm taking something to help so I can go out and see my friends or spend time with family I don't want to be robbed of those experiences. I totally flip it around on my friends when I'm having a bad day and say imagine someone stabbing you with a knife, would you feel like going shopping? lol I know drastic but hey. It's a daily battle for us. as for the "just have a baby" comment I also get that ALL the time everyone wants to offer their advice if they don't have endo they dont get it as far as I'm concerned.

[anjibella]

Definitely trust your own body, even when it seems like it is betraying you. Since I have been diagnosed, I have spent a lot of time getting to know my own body, and I feel very in tune with it. YOU are the one living in your body - don't let others discount your experiences.For the most part, my friends and family have been sympathetic, but I sometimes wonder if they think I am exaggerating, and that really upsets me. Even my boyfriend used to get frustrated with me for being in pain all the time - once I was diagnosed though, he has done a complete 180. I think he really understands now, that this is a disease, and I was right all along.

[Karen]

I just posted this elsewhere but thought it fit here, so since this thread was revived, here goes:

Someone so wisely told me the other day there's a difference between 'feeling depressed' and 'feeling depressed about how you feel'. Big difference! I explained it to a friend this way and she finally got why I was so pissed off that she was suggesting depression meds!