By nature humans are social animals. Being part of a community can have a positive affect on your mental health. Unfortunately ME/CFS and Long Covid leaves many of us socially isolated and lonely.

Making friends and maintaining friendships is challenging when you are chronically ill, particularly if you are housebound, but it is still possible to connect with others and build meaningful relationships.

Here are a few strategies I’ve picked up along my journey

Ask your friends or family if they would send you photos of what they are doing. I’ve been housebound for years so I’ve learnt to live vicariously through my healthy friends! One of them regularly sends me pictures of what he is up to. I love having this window into the outside world, it makes me feel less cut off from real life.

You could set up a WhatsApp group chat with a few friends or family members and use it to update each other with what is happening in your lives. If there are lots of people in the chat there is less pressure on you to contribute, you could simply be an observer.

I have a group chat set up with my sister and cousin where we chat about boys. They share their dating horror stories or screenshots of the inappropriate messages they receive on dating apps and we all have a giggle!

Voice notes are a great way to stay connected. Hearing someone’s voice seems much more personal than a written message. I don’t have the energy for long conversations so I find this is a good alternative. It enables me to stay in contact with my friends and allows me to fit the communication around my limitations. If you are too ill to spend time together in person this can be a good way of maintaining the friendship.

I find speaking a message easier than typing. Voice notes also give me the flexibility to listen to or record the messages when I have the energy. I am not under pressure like I would be in a face-to-face situation where you are conscious of using up your limited energy resources.

When you are housebound virtual events provide a great way to connect with other people. 

Nourish Therapeutic Yoga run online yoga classes specifically for people with chronic illness. Founder Shannon has ME/CFS so is fully aware of the needs and limitations of us spoonies. She even grades her classes by spoon level!

On the first Friday of every month she host a free zoom class. It consists of 20 minutes of gentle yoga, 5 minutes of meditation and 20 minutes of community chat.

There is no obligation to join in for the full duration of the class. In fact, Shannon gives you regular reminders to take breaks if you need to. You are never encouraged to push beyond your limits.

I have severe ME so am unable to do the full 45 minute zoom call. Instead I often skip the spoonie yoga and only join in for the community chat. I have my camera on but there are many people on the zoom call who keep their cameras off for the duration. There is no pressure to take part in the community chat, you can simply observe from the comfort of your own bed.

Chronic illness support groups offer the opportunity to chat to people who are going through similar things to you. You can ask questions and learn from other peoples experiences. Whatever problem you are experiencing you can be sure someone else has experienced it too.

Below are two groups for people with ME/CFS and Long Covid. I use these groups and have found them to have a positive vibe with people focusing on improving their health. They have provided me with more useful information than doctors ever have!

ME/CFS Recovery, Support & Inspiration run by Raelan Agle who has a fantastic YouTube channel where she interviews people who have recovered from chronic fatigue syndrome and Long Covid.

The Optimum Health Clinic – ME, CFS and Fibromyalgia Recovery Group – you do not need to be a patient of the Optimum Health Clinic to join the group.

There are definitely ME/CFS groups out there which have a more depressing and despondent vibe. Personally I stay away from these groups as I find they are not good for my mental health.

If you would prefer socialising which is not illness related try joining an online group for a particular hobby or interest you have. 

Social media has opened up the world for us housebound folk. I have found Facebook groups are a great place to connect with like minded people. 

Maybe you like reading so look for a book club. If you like craft find a group on knitting or origami. Perhaps you’re a big Netflix fan, is there a particular program you love? Search for a group where fellow fans chat about the show.

While I’m sure you know about dating apps, did you know there are friend finding apps too?! Bumble BFF helps you grow your circle of platonic friends.

The great advantage of apps is that you can explain your health situation before meeting the person. 

I have always struggled with explaining my illness and its limitations. I feel embarrassed and awkward bringing it up, particularly with someone I have only recently met. However when I was well enough to go out and socialise I could only do it for an hour and couldn’t walk very far. I needed the person I was meeting to be aware of my limitations. 

When chatting to someone on an app I find it much easier. I have the time to compose a message explaining my health issues. Then the recipient has time to digest the information and write their response. Awkwardness averted!

Obviously it’s up to you how much you wish to disclose about your health situation. Personally I don’t put it on my profile but if I’m chatting to someone and the opportunity arises I will mention it.

If you are not well enough to leave the house you could try apps or websites which are aimed at people looking for penpals. The Mighty, a website supporting the chronic illness and disability community, recommends Penpal World and InterPals.

Even though I’m housebound I still use friend finding apps. You would be surprised by how many people are happy being penpals and don’t ask about meeting up in person. That said these conversations do normally fizzle out after a couple of weeks but that’s okay because I’ve found other people to chat to by then!

The UK charity Sense has a virtual buddy program for disabled people.

The Sense team take time to learn about you and your interests. They then pair you with a buddy of similar age and personality who shares your interests.

Once a week you chat for an hour with your buddy either on the phone or online.

For people aged 5–18 living in London or Manchester there is an option to meet with your buddy in person.

I would love to hear how you deal with the isolation of living with ME/CFS or Long Covid. Pop your strategies in the comments.