Living with a chronic illness can be scary, frustrating and exhausting. Multiple Sclerosis in particular, with its invisible and unpredictable symptoms, often makes me feel like other people just don’t get it, or worse, don’t believe me. After all, they can’t see my disease. They can’t see my numbness, pain or fatigue. They have no idea what it takes for me to just get through the day and I’m certainly not going to bore them with the details because honestly, most people don’t care. They have their own problems. Mostly, I’m fine with that because I’ve got people who do care. People who even if they don’t quite get it, I can count on.
Everyone needs to know that they have people that they can trust and rely on. People, that you know will be there if you need them. Even if it’s not convenient. Even if you’ve not been great at keeping in touch because you’ve not been feeling well. Everyone needs at least one person they feel comfortable with to be themselves. To talk about anything and have them really listen. Even if what you are saying is not comfortable to say, or for them to hear. We all need to feel heard. We need people who understand what we are going through. Or who at least try to genuinely hear us. To tell us that our fears are justified or to show us a reason why they are not. Supportive people don’t try to fix you, they are just there for you during hard times. They might offer a perspective that we ourselves are too close to see or remind us of our inner strength.
Dealing with this disease is so much more difficult if you’re constantly trying to pretend you’re always fine. I tried that. It doesn’t work. Just admitting that it’s okay to not always be okay is a relief! Having the understanding and support of your friends and family is essential. I used to just avoid people if I didn’t feel well so not to spoil their fun but sometimes just having people there for you is enough to change your mood. No one can make you laugh as hard as that certain someone, spouse, friend, child. If you try to go it alone you are cheating yourself and the people who love you of the opportunity to show compassion, courage, and strength. It’s not a bad thing to admit to needing help sometimes. Plus, think of all the things you miss out on by staying home alone. Sometimes, if you speak up plans can be adjusted so you can join in too.
It’s difficult to show vulnerability but we need to learn to be comfortable talking about having MS. I still struggle with this. We need to know that it’s okay to tell our story, out loud, to at least one other person. We need to learn to ask for help or advice when we need it and to accept help or counsel when it’s offered. Other than friends and family there are many places that a person may find support. It’s really about making connections with people you feel comfortable enough with to share your story. No need to tell everyone, everything. Just share what feels right to you. But if people don’t even know you have MS, and you just drop out of sight, or suddenly start having issues, they won’t know how to react. They might feel uncomfortable offering help, or even to call and say hello, because they think they are invading your privacy. Let the people who you want in your life in.
If you don’t have people in your life, find some. People aren’t meant to live their lives feeling isolated and alone. Studies show that for humans to be happy, they need to feel like they belong. People need to feel a familiarity with other people. Julianne Holt-Lunstad, a professor at Brigham Young University said, “Being connected to others socially is widely considered a fundamental human need, crucial to both well-being and survival.” She also stated that in extreme examples, “Infants in custodial care who have lacked human touch, fail to thrive and die.”1Studies have also shown that people who report feeling lonely are more likely to experience worse symptoms when they are sick.
Here are some ideas on places to connect with other people:
Join online support groups- https://www.facebook.com/groups/MSWellnessProject/
- Join your local community center or YMCA
- Volunteer- It will help to change your focus.
- Church groups
- Join a MeetUP at MeetUp.com
- Join social media sites
- Join a business association
- Join a book club
- Take a class
- Go to a local event
- Check out the local Farmer’s markets
If trying to meet new people, just be genuine. Share something of yourself. Keep in mind that by sharing your story you might be helping someone else. Be positive and helpful. Be happy. People want to be around other people who make them feel good.
It doesn’t matter how you build your support system as long as you surround yourself with people who you trust that give you energy, motivate and encourage you. Anyone can be there for you during good times. It’s the people standing beside you during the hard times that matter.
Do you have a support system in place? Can you name 1-3 people you can call in an emergency? What can you do to widen your support circle?
Let’s build our tribe!