Posted on behalf of community member Mary Ann Massolio, Hematology/Oncology Social Worker,...
Practicing Self Care When Having A Bleeding Disorder
Having my undergraduate degree in Psychology, and currently pursuing my Master's Degree in Healthcare Social Work, mental health is something that I am very passionate about. I first knew that I was interested in the mental health field my junior year in high school, when I was given the opportunity to take a college level Introduction to Psychology class. Upon taking the class, I knew that I wanted to major in Psychology when I went to college, and at that point in my life, my plan was to become a Psychologist. As a junior in high school, I did not see any type of relation between having a bleeding disorder and mental heath. If you would have asked me at that time, I probably would have told you there was no relation what so ever. If you were to ask me that now, I would say there is a huge relation.
It was not until my sophomore year in college when I really began to discuss my bleeding disorder more openly. When I stop to think about it, I think it was college in general that helped encourage me to discuss it more. Something clicked, and I thought, "hey, maybe by sharing my story I could help others". Through the idea of sharing my story with others, I feel that by sharing my story, I am actually helping myself as well. I eventually discovered that my plan of becoming a Psychologist had changed, and what I really wanted to do, was to work within the bleeding disorder community. I decided that I wanted to do this by earning my Master's Degree in Healthcare Social Work, so I could become a LCSW supporting those with a bleeding disorder.
What a lot of people may not realize, especially when it comes to having a bleeding disorder, is that we as individuals and as a community, deal with a lot of things that other people don't have to. Whether that be worrying about joint or muscle bleeds, trying to cope with chronic pain from past or current bleeding episodes, figuring out a treatment schedule, trying to understand/set up payment assistance plans, or even trying to have others understand that we're still normal human beings. All of these additional issues can be a lot for a person to handle, which can often lead to anxiety and depression. For me, my next big worry in life is if I will be able to carry my own child or not. This is something that I hope and pray I will be able to do, but to my knowledge, there has not been a woman who has been able to carry a baby to term who has Afibrinogenemia. My hematologists believe that it is possible, but a lot of preparation and research will have to be done in order to determine if it is something that can actually happen. Risks that come along with that are, repetitive miscarriages, and my own personal thoughts of wondering if my body can withstand a miscarriage without bleeding out.
My anxiety tends to bother me the most right before I am about to get a treatment though. I have come to the realization that this is because I have had so many issues regarding accessing a vein, that it has gotten to the point that I just anticipate it taking a while to find a vein. The rooting around for a vein makes me sick to my stomach and I fight passing out. I make sure to drink lots of water to make sure my veins are nice and hydrated, but sometimes they just like to be stubborn and hide. Over the entirety of my life, it wasn't until the past few years that I realized I was holding in a lot of emotional feelings, not discussing them as much as I should have been when it came to my bleeding disorder. By not expressing my concerns and feelings about my bleeding disorder, I was actually adding to my anxiety. I have a very strong support system, but I think in my mind discussing these concerns with them, would make me somehow feel not as strong as I thought I had been. That is entirely untrue though, so very untrue. I realized that I am actually stronger by asking for help and stating my thoughts and concerns when it comes to my anxiety regarding my bleeding disorder. Everyone goes through things in life that bother them, and asking for help and support through some, or all of these times is exactly what you need to do, if by doing so, can make you feel better.
So a few ways that I practice self care when it comes to my bleeding disorder specifically, is by first and foremost talking with my family and friends when I have any type of unsettling feeling towards my bleeding disorder. Don't keep these feelings to yourself, whatever type of feelings they may be, depression and/or anxiety. As Lady Gaga recently stated regarding mental health/illnesses "secrets keep you sick". So please, if you're having a difficult time coping with your bleeding disorder, talk with someone about it, and if you don't have anyone to talk to about it, talk to me. I would be more than happy to talk with you about the struggles you're facing when it comes to your bleeding disorder. Another way that specifically helps me relax when I'm feeling anxious about my bleeding disorder, usually right before a treatment is by bringing a book with me to the treatment. Reading a book helps me relax and takes up a good amount of time while I am waiting for the treatment to be administered. Another thing, that may sound a little funny, is when I go to the treatment center to receive a treatment, I usually go early in the morning, say by 9 AM, mostly because it takes about 5 hours to complete a treatment, but I know that if I get there early, while I'm there I'll be able to watch the Price is Right at 11 AM followed by the E! News: Daily Pop at 12 PM. I enjoy both of these shows quite a bit, and it gives me something to look forward to and occupy my mind while I'm receiving a treatment. After a treatment I'm genuinely tired and don't feel all that good, but I make sure to get something good to eat and pick out a good movie to watch while I may end up dozing off on the couch. This is something that relaxes me. Outside of doing things that help relax me while getting a treatment, I enjoy taking time to myself whether that be by going to the spa and getting a massage, going to the book store or even going to the gym.
Practicing self care is important, especially when having a bleeding disorder. Finding healthy things to do that are both calming and relaxing can truly help your overall well being. Take care of yourself.