“Relationships aren’t perfectly symmetrical and that’s okay.” – Melissa Rothstein
After my diagnosis, I learned that no matter how long someone has been in your life, ALS causes such dramatic change that you will have to lay a new foundation for your relationships. When I felt my relationships fracturing under the strain of my mysterious disease and growing disabilities, I realized I needed help. I turned to my best friend, Melissa Rothstein.
Melissa has been living with Crohn’s Disease, a debilitating chronic illness, for ten years, so I knew she would understand my situation. Plus, as a program coordinator at the Wellness Center at UC Davis, she saw the isolation disabled students faced and the way it damaged their mental health, so she worked with the counseling staff to build community amongst the struggling students. In doing so, Melissa became an expert on managing relationships while dealing with disabilities. She has always given me great advice, and now she was uniquely qualified to help me with my social dilemma.
As we worked through individual challenges when they arose, I began to put together a list of ways to strengthen my relationships. The list worked so well that I decided to share it in an article. I interviewed Melissa to gain some final insights and help me articulate my thoughts. Thank goodness I did because she reminded me that self-care is a vital part of a healthy relationship. We have her to thank for step number three.
You can lay the foundation for healthy relationships by following these steps:
1. Educate your loved ones
Making sure they understand what is happening to you means that they will feel less afraid and overwhelmed. These emotions tend to create distance in relationships. I like to share this two minute video (https://vimeo.com/165626427) with friends. It explains how ALS works, what the future holds in terms of progression, and it ends on a hopeful note, citing the fantastic research currently underway. I email it to loved ones, and I let them know that I am happy to answer questions. The video shrinks the task of educating people while opening the door for discussion.
2. Keep in mind that each friend will react differently.
Determine how much to tell each friend about your health and emotions in order to avoid making people uncomfortable and protect yourself from being vulnerable with someone who can’t offer you support. If someone has always been more interested in casual fun than heart-to-hearts, they probably won’t change into a sensitive listener just because you have ALS. Consider each individual’s personality before confiding in them. You can also figure out how much to tell someone by their reaction to a basic update. If you say, “I’ve been having a rough time with some symptoms lately,” the friend who asks follow-up questions can handle more than the person who simply says, “I’m sorry to hear that.” Knowing who to confide in – and who not to – can save your relationships.
3. Put your health first.
Be clear about your needs and limits. This will prevent problems and misunderstandings later. “People can’t reconcile how enthusiastic I am in a relationship with how often I cancel plans, don’t call, seem absent,” Melissa shares. “For me, canceling plans has been an enormous source of stress and lower self esteem. Plus, it often gets interpreted as me not being as interested anymore in the relationship. That leads to them thinking I just don’t take their needs seriously. I have learned just be really up front about what’s going on.”
Put your health first by:
– Learning to say no. Melissa says, “I changed my default response to be “let me think about that” rather than saying yes to everything and then having to back out later. [This way] I don’t get overextended, burn out, and act inconsistently.”
– Setting a time limit. Try saying, “I’m free from 4:00 to 6:00” instead of “I’m free at 4:00,”
– Planning manageable activities. Be realistic about what you can handle. If attending a football game will exhaust you, suggest an alternative: “Thanks for inviting me, but I have to pass. I’d love to watch the next game with you at home, though.”
– Being mindful of your schedule. If you are having a friend over to watch a movie, leave the next day free so you can rest and recover.
4. Be prepared when people ask to help.
Your friends and family will be eager to help you, but they may not know how. Consider using the surprising and insightful list (https://alsnewstoday.com/2017/09/12/als-patients-heres-how-to-help-your-friends-help-you/) ALS Wellness Blogger Dagmar Munn created. Accepting help empowers the people in your life and encourages new intimacy in relationships. However, since accepting help can make the relationship less symmetrical, it can be difficult to do. Melissa offers insight that helped her overcome this hurdle: “[I found out] people like to help me as much as I like to help them.”
5. Reassure your friends that they matter.
Remind loved ones that even though you are sick, there are still two people in the relationship. My friends struggled with talking to me about themselves because they compared their own problems to ALS. I have to constantly reassure them that their lives are as exciting to me as ever, and their problems are still important. Ask specific questions to get your loved ones talking. For example, if the conversation stalls after you ask, “How have you been?” follow up with a question like, “How are things going with your new supervisor?”
Follow these guidelines to make your relationships stronger than ALS!