Updated: Mar 31, 2019
Living with Dysautonomia has changed every aspect of my life, from exercise, relationships with my family, friends, and peers, to my career, intimacy, financial stability, travel, hobbies, and social life. My life looks a lot different now than it used to. Socializing while living with a debilitating chronic illness has been very challenging.
Not having the energy or stamina to engage in conversations or interact with others is a painful reality. There have been a lot of cancelled plans and a lot of lonely days and nights. I went from being a lively active person, who loved nothing more than being with her friends, to someone who could barely withstand a conversation without needing to lay down. I've missed engagement parties, weddings, bachelorette parties, reunions, birthdays, bridal showers, baby showers, and last but not least, I wasn't able to have my own engagement party, bachelorette party, bridal shower or wedding with my closest friends. These are huge moments in our adult lives that can never be replaced. My friends have all been extremely understanding with each event, but I will never be able to look back on those experiences and say that I got to enjoy them.
Social situations require me to be "on" when more often then not I feel very "off". I try to be transparent when it comes to my symptoms, but sometimes I’d rather just "be". When someone tells you they aren't feeling well, the first reaction is to offer help, but sometimes it can feel overwhelming with a million questions coming your way. It is best to offer support and not suggestions. When I am out or I am with a friend or a family member and I start getting symptoms, I feel completely trapped and torn. If I speak up, will I let everyone down if we have to change plans or if we need to stop whatever we are doing and have to leave? Will others think less of me or think I’m faking it? I am constantly caught in this in between where I want nothing more than to be with others, but my body doesn't always allow me to do so. This is something I struggle with every single day. I may look "normal" on the outside, but on the inside my body is at war with itself and that is something that cannot always be seen, only felt.
I have to think about every single social situation before it happens in order to figure out how my body is going to tackle it and get through it in one piece, knowing that afterwards, I may "pay" for it and then have to deal with the anxiety of knowing that I may feel bad if I do that activity. Sounds exhausting just thinking about it, right? This is my reality. I want to be able to go to dinner without having to worry about the noise level or where the closest bathroom or exits are or whether I am able to sit in the right chair because I can't have my feet dangling due to blood pooling.
When my friend from home sent an email to 6 of us about going away for the weekend to her lake house, I literally cried. I was overwhelmed with joy and sadness at the same time. I was excited about the possibility of spending a weekend with my best friends from high school, but I was also sad because I wasn't sure if I was going to be able to do it. A lot of things had to happen in order for me to get there, but I knew it was something that I really wanted to try to make happen if I could. I was craving friendship in a way that I didn't know was possible. I missed my friends so much and I had missed so many things over the past couple of years and I just wanted to be able to do this one thing.
I was extremely anxious about going because I had not been anywhere without my husband or my family as a support system since becoming ill. Not that I didn't trust my friends, but it's one thing to hear about illness and it's another thing to witness it and have to succumb to needing to lean on others and ask for help. I also had to trust myself in a way that I hadn't done in a long time. I have also changed as a person, illness will do that to you, and I wasn't sure if the interactions would be the same. Once I got there, it felt so good to just be with my friends in our sweats all weekend watching movies and eating delicious home cooked meals.
On the last night, we stayed up a little too late talking and I knew I was going to pay for it in the morning, but it was worth it to have that experience. I got to my room and shed tears of happiness. For so long, I had been the sick girl in every situation and those two days I got to just be me and that was a victory. My body allowed me this opportunity that I am so grateful to have had. I did end up paying for it the next day, but like I said, it was worth it and I could let my body rest and recover without any expectations.
Socializing while living with a chronic illness is a constant struggle that extends beyond cancelled plans alone. You are never sure how you are going to feel when you wake up each day. You can't expect everyone to understand and you can't control what others are thinking. You know how hard you are trying and how badly you want to be doing things with others. Those that care enough will stick around and support you. When I am able to do things with friends and family, I try to live in the moment. It's hard not to think about what life could be like or what life was like before the illness, but accepting where I am in the process at this current place and time helps me to be present and enjoy what I am able to do instead of focusing on what I can't do. When there are days that socializing isn't possible, I have found other ways to connect with people whether it's via text message or on the phone.
Do what is best for you, there is no right or wrong. It is ok to do it your own way and take time for yourself if that is what your body needs.
Sending love to each and every one of you!