Relationships are hard whether or not you are chronically ill. Friendships come and go, hearts get broken and at times loneliness becomes our best friend. Dating is hard for someone who has a ‘normal life’. Try dating when you have to explain to the person you are meeting that you are riddled with disease. Not very sexy is it? Having an invisible illness that affects our entire bodies is hard to live with all on your own, let alone share with someone else.
There are the random bouts of depression and heightened anxiety, the constant brain fog, resulting in not being able to comprehend your own thoughts, and short term memory problems that cause you to repeat the same story over and over again. We are in constant battle with ourselves, even on the good days. We wake up each day wondering how well our legs are going to work, or if we will be able to make it till noon without having a bout of vertigo. There is a constant feeling of being lost, or in a dream state, feeling as if we are running on autopilot.
We are going about all of this on a day to day basis, all the while having to put a smile on our faces in order to make everyone around us feel more comfortable. Try doing this while sharing your life with someone else, or trying to hold onto those friendships that seem to be slipping away.
Planning trips, meeting the parents, going out for dinner (Lyme comes with a lot of diet restrictions), cuddling etc, conversation, anything that you do with someone in an intimate relationship, is EXTREMELY difficult for a lot of us. Every single thing we do on a day to day basis takes a lot of energy, can cause us pain and discomfort and is terribly hard on our brains. Which results in our anxiety and depression being heightened. Finding a partner who is willing to take all of this on with us, is not easy.
For a lot of us suffering from a hidden disease it is hard to find anyone in our lives to be able to openly talk about what we go through too, whether that be a partner, friend or family member. That in itself is why a lot of us hide from others, live in loneliness, and have constant fear in the back of our minds that no one will ever truly love us or respect us, disease and all.
Communication, patience, compassion, affection and understanding are some of the things that are needed by the people we share our lives with. It has taken some of us years and years to master these on our own. Finding another who can live up to those standards is the hard part. Living in our bodies can be terrifying as one minute we can feel extreme dizziness, the next shooting pains in our thighs. Planning on going for a walk? Better be prepared to take a lot of breaks and be open to piggy backing. Do your friends have kids? Playing with them requires a lot of rest time and high hopes they like puzzles.
If you are sharing your life with someone who suffers from a chronic disease, talk about it with them, ask questions, give lots of hugs and kisses, make them laugh and spend quality time with them. We are in constant battle with ourselves and living with this disease can feel like we have a storm cloud above us all day. Stripping us of all the love and happiness in our worlds. Help us bring some sunshine back into our lives, so we can turn that storm into a rainbow.
By Dana Lee