As a VEDA Ambassador, in addition to educating the
public, it's great to feel a connection to the actual organization, to feel
like there's a whole supportive community.
I see people on FB, particularly within the VEDA community, relating to
what I write, and feeling like I'm giving them a voice. It's really very meaningful for me that my
blog helps someone who's suffering feel less alone, and I love when someone
comments, because then there's even more sharing of personal experiences. I believe that sharing is an opportunity to
ask questions, a way of getting info, and maybe most importantly giving and
getting support. Developing a whole
support system - not just one person, but a whole system - has made a big
difference for me.
Two things happened online that made it very clear to me
that I'm not alone in feeling this way, needing support and connection. The first was VEDA reader's reactions to my
"After the Party" blog. The
volume of comments, "likes," and shares showed me that lots of people
could really relate to my experience. I'm
saddened that so many people feel so alone in their struggles. Feeling alone makes it so much harder to feel
hopeful, and makes any challenge feel so much more challenging. I'm very touched that so many felt I spoke
for them and wanted to share my words, and hopefully a few people gained some
insight.
That brings me to my other online experience. I used to participate in an online support
group; I don't follow groups (I just go
to group pages when I want to) because it's too much for me visually. Because I am on this list, I got a
notification that it was going "secret." I was surprised by this, and posted a
query. I was then surprised by the extent
of conversation that my post started. It
turned out that among other issues, the admin. was getting overwhelmed with the
number of members. Thankfully because I
opened my mouth, an FB friend of mine who is also in the group and saw my post,
got the idea to start a sister group.
This is wonderful, and I hope word will spread about his group.
Getting support from an online group is great, but like
anything, there are limitations.
Getting a lot of input can be a good thing, but sometimes can get - at
least for me - confusing. I also have
trouble visually following lengthy threads.
For me, sometimes messaging one or two friends is more satisfying. I can
get more personal, and get to know the other person better, so the connection
feels stronger. Having online friends is
huge for me since my real life social life is very limited because of my
disorders. Compared to face to face,
private messaging has limitations, but clearly is better than nothing. It's great to be able to message about my
situation without having to explain anything.
To just know that they get it.
The downside is that I have limitations in terms of computer use. I always have to limit the amount of
scrolling, reading and popping up of message screens when I'm online. The reactions I have vary: headache, dizziness, generally not feeling
good. But the solution is always that I have to take a break from the
computer.
For me, various offline support is also really important. Talking with Dr. Glad (my psychologist)
doesn't give me a social life, but definitely helps me to cope. I really care about mental illness for
personal reasons, so for people with mental illness to be encouraged more and
more to seek help is great, but people (like me) living with other kinds of
invisible disorders need to ask for help as well. It takes courage and strength to seek help
because talking about these disorders is difficult. Venting, letting emotions out with Dr. Glad
isn't easy, but it's also a relief. If
you're thinking "yeah, great for you, but I can't afford counseling/therapy,"
I suggest checking what community resources are available. If you are not up to doing the phone calls,
etc. enlist someone's help. A friend, a
family member, anyone with whom you can share.
You don't have to give all the details, just enough so they can help you.
Dr. Glad isn't the only one I talk to about what's going
on with me. I always share with Joyce
and Ann. I feel really strongly that if
you're in some kind of rehab, you can't be shy about talking with whoever
you're working with about your life. I
get something a bit different from each friend I have, and different therapists
are no different. I get coping and
management ideas from each of them, which is really helpful. But it's also because I want them to know me
as a person, not solely problems. I
can't imagine being able to work with Joyce or Ann if I didn't share a bit
about what my actual life is like. I
don't think they could help me if their only image was of me working with
them. I share a mixture of stuff. I might say "I'm tired today," or tell
them about something challenging coming up, or something I'm anxious about, or
some effort I made. Everything matters. I'm a whole person, so I need to give them a
full picture.
I truly hope that everyone has at least one supportive friend
and family member. Friends and family
are an important part of my support system.
This part of my support system is not about someone being able to fix my
situation, or say just the right thing. When
I'm having trouble coping, right in the moment, I don't need advice, or suggestions. Wanting to help is nice, but sometimes I just
need to be listened to, and I suspect others feel this way as well. When my invisible disorders get me down, and
I'm feeling frustrated, support is feeling connected, even if it isn't in
person. I need my friend, husband, whoever,
to just listen. Even with Dr. Glad at
times I just need him to listen. Let me/them
vent, cry....and don't try to fix anything.
Say that you're sorry it's hard, that you won't give up on me/them. Feeling
connected, knowing people care and are rooting for me helps me feel hopeful, helps
me to feel like I want to keep on trying.
And once I'm done venting, letting everything out, I can see the
positive side again.
