How do I help my support team? My family & boyfriend do not understand my struggles. My family wants what used to be and my boyfriend is growing weary from seeing me in pain & tears. I have deliberately hidden a lot from my family but have shared everything with my boyfriend. It is tearring me apart. It feels like my family knows I have secrets. My boyfriend has threatened leaving me if I don’t share “how to fix it”.
There is non fix. MS has taken so much; my health, career, happiness, now love? It is so cruel!
Wow, Azjackie. You are dealing with a lot! Have you considered sharing some of the articles from this community with your loved ones? I know that sometimes, it is easier for our family and friends to believe what we are going through when it comes from a third party, like our articles. You can say, “This article explains exactly what MS is like” or something like that. If your boyfriend is experiencing Caregiver Burnout, you might need to rely on your family for some assistance, as opposed to just him. But, in order for them to help you, you need to tell them exactly what you need. If you need a ride to the store every Monday, tell them that. If you need someone to call every morning to see how you are doing and whether you need help, tell them that. If you are in severe pain one day, don’t lie to them and tell them you’re fine. Go ahead and tell them you feel terrible. You can explain that you, too, want what “used to be”, but since that’s not possible, it would be best for everyone to make the best of the “what is”, if that makes sense. You might like this article about asking for and accepting help — https://multiplesclerosis.net/living-with-ms/asking-for-and-accepting-help/. You are not alone in this! Many people here understand what you are going through.
There are also support options for you that might help you not feel like your only outlet is your boyfriend. You can check to see if there are local support groups meeting in your area — http://www.nationalmssociety.org/Resources-Support. Also, the National Multiple Sclerosis Society offers Peer-to-peer support. Think of it kind of like penpals for the digital age — http://www.nationalmssociety.org/Resources-Support/Find-Support/Connect-with-Peers-One-on-One#section-0. It might help you to have someone to talk to that gets what you are going through. I hope this helps. The National MS Society also has resources for loved ones like your family and boyfriend. Don’t be afraid to reach out or to help your boyfriend reach out for help. I hope this helps. And remember, you are welcome here anytime you need to talk! Thank you for reaching out to us. Best, Erin, MultipleSclerosis.net Team Member.
I sincerely hope you are able to reach out to your family and get the support YOU need to manage your MS to the best of your abilities. Thank you again for being here! Best, Erin, MultipleSclerosis.net Team Member.