Support

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.

I'm extremely thankful for those who have been supportive and who weren't absent when I needed them most. But my support group has never been what I described as fully "well-rounded" covering the different types of people I described earlier. I've had my share of people not being there for various reasons and I've had times where sometimes people were there and other times they weren’t. Although I might not have had a whole lot of support, I've kept going and pushing through. I feel like my FAVA journey has definitely been more difficult than it could have which is why I urge parents, friends, family, caretakers, and/or close co-workers, to never be absent or silent when someone may need you most. I constantly feel as if I'm alone in this medical battle but I have to regularly remind myself who I have around me and reach out to them when I feel this way. In my opinion, the emotional component of FAVA is equally challenging as the physical component and support will help lessen the emotional scars that accompany the physical scars of FAVA.