One of the biggest challenges when living with chronic illness is loneliness and isolation. It can feel impossible to stay connected with old friends when you feel as though you have nothing in common with them anymore. After 15 years of living with ME/CFS and Lyme disease (and having two sons with these illnesses), I have experienced the gamut of friendship failures and successes.
Here are some suggestions for ways to nurture the friendships you have, let go when necessary, and make new friends, when your life is ruled by restrictions:
Be open and honest about your illness but don’t dwell on it. The hard truth is that most people feel uncomfortable in the face of chronic illness, whether due to not knowing what to say or an unconscious fear that the same thing could happen to them. I find that the best approach with most family and friends is to adopt a matter-of-fact attitude. Show them through your example that it is OK to talk about your illness.
Provide specific information on how your illness affects your interactions with them, such as “Going out in the evening wipes me out, but I’d love to see you if you want to stop by my house during the day” or “Exercise makes me sicker, so I can’t handle shopping. Want to meet for a coffee or tea instead?” Be open about your limits and answer any questions your friends have. However, you should also try not to focus too much on your illness. Be direct and honest without letting your illness take center stage in your relationship.
Find common ground. So what DO you talk about with your old friends? You may feel like you no longer have anything in common, but you can probably still relate to them in some ways. Talk about what you both enjoy and find new areas of connection. Ask what book they’ve enjoyed recently, talk about your latest TV show obsession, or discuss favorite movies. Focus on things you still have in common: your childhood spent together, your kids’ friendship, or your neighborhood.
Arrange interactions according to what you can handle. Once your friends are aware of your limits, suggest ways to get together that work for you. My friends know that I need to nap every afternoon, so we get together in the morning or for lunch. We used to take long hikes together, and they know I can’t do that anymore, but I am able to take a short walk with them while wearing my heart rate monitor. Because I’ve explained, they are very patient when I have to stop for my heart rate to come down – we just keep chatting while we wait!
Maybe you can’t leave your house, so ask a friend to come for a short visit. If you have trouble getting up in the morning, arrange to meet a friend for dinner. If you are easily over-stimulated by noise and lots of people, choose a quiet, uncrowded place or meet at home. If you used to love going to the movies together, invite your friend over for a movie night in. Once you have simply and honestly explained your limits, your friends will understand and be happy to work around them.
Stay in touch online & by phone. When you can’t manage to get out or even handle a visitor, try not to disappear from friends’ lives. Stay in touch via phone or text and on Facebook, Twitter, Instagram, and Snapchat. Don’t wait for them to reach out to you – they may be afraid to disturb you. Just send a quick message to ask how they are, let them know why you aren’t out and about, and mention your new favorite TV show to start a conversation!
Do your part to maintain old friendships. When you are chronically ill and isolated, it can be easy to fall into the trap of self-pity. Believe me, I’ve been there. It feels like everyone has forgotten you and gotten on with their lives. The truth is most likely that your friends want to reach out, but they’re worried they’ll say the wrong thing. So, don’t wait for an old friend to contact you. Reach out yourself with a text or phone call or e-mail. Let them know it’s OK to contact you and that you miss them, and use the tips above to stay in touch.
Subscribe to the World's Most Popular Newsletter (it's free!)
But it’s OK to let a friendship go when it’s no longer working. On the other hand, sometimes you have to let go of a friendship, as hard as that is. I had two close friends who stopped calling and e-mailing when I got sick. It was incredibly painful at the time, but I had to finally admit they were no longer a part of my life. One I literally never heard from again. I tried to reconnect with the other friend a few years later, and she admitted that she felt horribly uncomfortable in the face of my illness and didn’t know what to say. We traded a few awkward e-mails and then lost touch again, and I had to accept the friendship was over. It can be upsetting, but if you have sincerely tried to stay connected and the friendship is still not working, it might be time to let it go.
Make new friends. Thankfully, the reverse is also true – you can make new friends! It’s more difficult when you are ill, especially if you rarely go out, but it is still possible. Homebound or not, you can find plenty of new friends online. Visit blogs or Facebook pages and groups that focus on something you enjoy, like reading, knitting, art, or TV and movies. Join discussion forums or Facebook groups for your illness and start a discussion (if off-topic threads are allowed) on your hobby or interest.
If you are able to go out, check your local library, bookstore, and other public venues for activities where you can meet people with similar interests: a book group at the bookstore, a history lecture at a local museum, or a knitting group at the library. Think about your interests and where you might find like-minded people. You can also use virtual communities to find new in-real-life friends – in a discussion forum or Facebook group, ask if anyone else lives in your region and try an in-person meet-up. I started a local support group this way, and they have all become close friends. We gather for potluck dinners or meet for lunch; these new friends have enriched my life.
Chronic illness adds unique challenges to the already tricky business of finding and keeping friends, but the effort is well worth it. Friendship is an important part of life, bringing kindness, comfort, and plain old fun. Given our isolation, we need friends more than anyone, and solid friendships can provide much-needed support. Do your part to make your friends feel comfortable and take initiative, rather than waiting for them to reach out. Go send a message to an old friend now…and join an online group to meet new friends!
Suzan Jackson, a frequent ProHealth contributor, is a freelance writer who has had ME/CFS for 15 years and also has Lyme disease. Both of her sons also got ME/CFS 13 years ago, but one is now fully recovered after 10 years of illness and the other is in college, still with ME/CFS plus three tick-borne infections. She writes two blogs: Living with ME/CFS at http://livewithcfs.blogspot.com  and Book By Book at http://bookbybook.blogspot.com  – stop by and leave a comment if you like to read and want to make a new friend. You can follow her on Twitter at @livewithmecfs.