Living with ALS can cause dramatic changes to your relationships. When I felt my relationships fracturing under the strain of my disease and growing disabilities, I realized I needed help. So, I turned to my best friend, Melissa Rothstein, who has always given me great advice.
Melissa has been living with Crohn’s disease for 10 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. She worked with the counseling staff to build a community among the struggling students. In doing so, Melissa became an expert on managing relationships while dealing with disabilities.
As we worked through individual challenges when they arose, I began to put together a list of ways to strengthen my relationships. 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 three below.)
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 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. 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. I have learned just be really upfront about what’s going on.”
Put your health first by:
– Learning to say no. Melissa says, “I changed my default response to ‘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 this list created by fellow ALS News Today columnist Dagmar Munn that suggests several ways on how to ask your friends for help. 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?”
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.