This
topic is very personal to me for many reasons but I feel like it absolutely
essential to cover. Living with a chronic illness such as FAVA is not only
emotionally difficult for the person who has it, it is extremely difficult for
the people in that person's life as well. I don't think this post will even do
it's justice to cover and explain how support from others is crucial for those
who have a vascular anomaly, FAVA or a chronic illness. There are a variety of
ways to provide support which I will cover in a different post.
Support
can come from a variety of people including friends, family, significant
other's, professionals, support groups, co workers and many more. Although
support is given differently from person to person, I strongly feel that the
types of support vary between how that person is connected to you. Support
given from a parent might differ from support given from a significant other or
a friend. I feel like support from a variety of sources and a variety of people
can lead to a well-rounded, individualized support group which can help those
who have FAVA along with the people whom are connected to the person who has
FAVA.
So this
well-rounded support concept sounds great and sounds promising to help get
through the emotional aspect of having FAVA with the least amount of emotional
scars possible. But, what about the people who aren't so fortunate to have the
support? From the perspective of a person with FAVA, the reason’s I’ve
witnessed vary from situational attributes or personal attributes depending on
my relationship with the unsupportive person. A few reasons I’ve witnessed
included people who don’t believe me when I’m in pain, people who don't know
how to handle it so they slowly try to lose touch with me, those who aren't
empathetic and feel like it's my fault, those who believe that I can handle it
on my own and don't offer support because they think I’m "strong
enough" to handle it myself, those who are in denial about me having a
chronic illness, those who think that "it can't be that bad", or
those who are "too busy" to offer support. Regardless, there are a
variety of reasons to which someone may not be supportive. Ideally, one may
wish to disconnect from these people who may not offer support or who may make
them feel unworthy and hopeless. I feel strongly about letting the people who
you feel that hold you down with negative thoughts and energy go because I
believe that you deserve surrounding yourself with people who lift you up and
who support you through your pain, medical decisions, and emotions. Although
these people may play an important role in your life, you need to ask yourself how important are they if they keep bringing you
down?
So what
do you do if you don't have support and are surrounded by people who bring you
down? My answer is to really look at the people in your life and think about
who is there for you when you need them most and surround yourself with
positive energy. Leaning on others is okay as
long as they are supportive. You may find that the people who you'd least
expect are there when you need them and the people you most expect to be there
aren't. But during what may seem like a medical chaos with your battle of
having FAVA, support can help you greatly if you allow yourself to receive it.
Don’t be
discouraged if you don’t have support from people you’d expect to have support
from. Although ideally you may hope to have support from everyone including
friends, family, significant other's, co workers, and/or others, you might have
support from one or two of these groups of people, and that is okay! Although it may be harder getting
through this without support from a specific group of people, it definitely is possible. So don’t wear yourself down if
you don’t have a significant other and/or supportive parental figure in your
life. Support can come from other people, no matter who it is. It is possible and you
aren’t alone. Regardless if you have FAVA or are a caretaker or friend,
support can make this battle seem less overwhelming if surrounded by people who
you can relate to and who support you most.
Since
FAVA is generally is discovered at a young age, the person who has it may not
have the mentality to be able to handle it all on their own. I even feel like
adults shouldn't have to handle it on their own. However, during adolescence,
it is common for symptoms and pain for FAVA patients as well as other vascular
anomaly patients to get worse. Support during this time is crucial , even for
those who don't have a chronic illness because adolescents are so fragile and
impressionable during this time.
For those
who are younger and may not be able to separate oneself from the people who
bring you down, (for example family who you may live with or friends you may
see daily in school) my advice is to keep surrounding yourself with people who
do help and to keep looking forward. You need to learn how to cope with
negative energy and words and to remember that you can rise above the
negativity and that this is your life. You have the power to change a lot of
things, and if not now, you can later when you are older. But, you are never alone. Many people don't have the
support they would like to have from certain people and you may feel like it
make things harder but it is not impossible.
There are many sources of support out there for you, and although they might
not be in the direction you hope for, there are people
willing to help you through this including support groups and professionals.
I feel
like parental/guardian support during childhood and adolescence is the most
important form of support you can have especially because FAVA is very
treatment-based and there consent laws in place for minors who need surgeries
and/or procedures. For this reason, I feel like it is important to maintain a
supportive relationship between parent/guardian and child. For caretakers,
friends, family, or significant others of people with FAVA or a vascular
anomaly, support can help avoid emotional scars and help the person who has
FAVA. Don't be absent in this person's
life during what they might feel as a medical chaos or when they are in pain.
Being absent or silent is the worst thing to do.