When you think that people who are well can end up isolated, it’s easy to accept that people with a chronic medical condition can go the same way. Isolation can be physical, emotional, mental (and I don’t mean all in your head), it can happen to you, or you can bring it on yourself. Having any medical condition can be isolating, but – and this is just my (probably biased) opinion – ME/CFS can be somewhat more so than many other conditions because of the broad range and lasting impact of symptoms.
With ME/CFS, physical isolation comes about because it’s harder for you to get out of the house never mind socialise, and even if people are willing to come to you, you may not be up to seeing them. It’s quite easy to become nervous of going out, accustomed to being alone, and your ability to interact comfortably with people diminishes. Like anything, if you don’t use it you lose it. The condition may also make it harder to be around people, not just because of the fatigue but other symptoms such as being sensitive to noise, suffering from pain, or having to socialise through the screen of Brain Fog.
Emotionally you may find it difficult to connect with people, your relationships are put under greater strain, and your emotions and moods themselves may drive people away: it’s tough to be around someone who’s depressed or angry – sometimes I wish I could get away from me, so I can perfectly understand why other people want to! Worse, feeling emotions can be draining, and so you may keep yourself away from people to limit that strain. Also, if you have Brain Fog it can be difficult, embarrassing, and frustrating trying to keep up a conversation.
By mental isolation I mean thinking/feeling that no-one can understand what you’re going through, that you’re the only one, that you’re no longer ‘normal’. . . Having these feelings (while totally normal) can influence not only whether or not you choose to interact with people, but how you do so. If you ended up losing a lot of friends at the beginning of your illness, it can be doubly hard to put in the effort and risk making yourself vulnerable again by getting to know new people. There’s also the issue of when, how, and how much to explain about your condition.
Another consideration is priorities, and how you relate to your friends. If you used to spend a lot of time together either working or going out, and suddenly you can’t, can you still relate to these people? Do you still know and care about the people and topics discussed? If not, you need to find out what does interest you now and maybe even a different way to connect with people. Because managing this condition usually requires many lifestyle changes, and you may become something of a different person in order to cope. (By choice or necessity)
Having said all this isolation, like ‘alone’ or ‘single’, doesn’t necessarily mean something bad or that you’re lonely. Some people don’t like crowds, don’t have a lot of friends but a few really good ones, prefer an evening in watching a film or reading a book to going out. . . Some write a blog and connect with people online. In other words, just because you don’t have those stereotypical scores of friends and endless social activities doesn’t mean you’re abnormal. It doesn’t mean you’re not making the most of your life. Sociability is a sliding scale and you have to find the point – the balance – that’s right for you. Why do you think some people love living in cities while some live in inaccessible mountain valleys?
The difficulties (for anybody) come when you want to be around people but struggle to do so. Basically, it matters when your isolation affects you mood and/or quality of life.