I am now into my seventh year of having M.E/CFS and am beginning to face the reality that I am unlikely to recover before my daughter grows up. With the years spent predominantly within one room my invisibility and isolation from society deepens. Having a chronic illness is a very lonely place to be and I am lucky enough to be living within a family, imagine how alone I would be without them? In my experience most family and friends do their best to ignore the fact I have M.E in a way that they would be unlikely to ignore cancer if I were unfortunate enough to have that. If they ever do mention my health what they say is often offensive, along the lines of 'you really should try to get better/ do gardening/ pull yourself together' like recovery hasn't been my sole focus for the past 6 years!
I wanted to give a little advice to those of you out there who may know one of the 250,000 people in the UK with this illness, who may not know what it is okay to do or say, in order to encourage you to break down the barriers between the internal world of being imprisoned by a chronic illness and the outside world. Here goes....
1. Don't assume you know how a person with M.E/CFS is feeling.
Most people assume the key issue is 'chronic tiredness' because of the unfortunate name the NHS has given our condition. Chronic tiredness is something you experience as a first time parent, and you can push through it, you have to for the first few years of parenthood in order to avoid having your children taken into care! (See I've still got a sense of humour, even after all these years) Not only does the type of tiredness we with M.E/CFS experience bear no resemblance to any tiredness ever encountered in an ordinary or even ill life - it feels cellular as if each molecule of your being is wading through treacle - you can not push through it, you can not ride the wave, you can not ignore it and do a little more, often because you simply can not physically make the energy you need but even when you feel you can push a little further there are DIRE CONSEQUENCES, so if you are not an idiot you learn not to outstrip your capacity even if you really, really want to.
2. Don't assume you know what symptoms your friend is experiencing.
To be honest exhaustion is often the least of my worries, it is all the other symptoms that my body cycles through either because I have tried to do something vaguely enjoyable - such as leave house-arrest for two hours and venture out for a coffee with my partner - or simply because that's what my body happens to be inflicting on me at the moment and I have no idea why, now, this minute.
3. Do ask your friend about their illness, about the symptoms they personally struggle with and what their life is like.
Yes we all know how boring other people's illness is, but simply ignoring it is not going to keep your friendship going for long. Would you just ignore or show no interest in what a friend was experiencing if they had cancer, when they had to crawl back to bed after an hour, or you knew they had chemo, would you just roll up at their house and never mention it? Yes, I know some people will disappear completely from the scene, as with all illness, but if you do stick around would you ignore your friends cancer? I somehow doubt it. The thing is we have sympathy, empathy for people we know with cancer and one of the reasons for that is we are scared of getting it ourselves and that fear makes us think about what it would be like to have it, which immediately makes us more open and therefore a tiny bit more sensitive to what they must be going through. We don't imagine we will ever contract M.E/CFS, we never imagine what it is like to have that, until we wake up one day and ...
People with M.E/CFS are as bored as anyone with the grinding, relentlessness of their illness but if you take the time to actually ask them how the illness operates for them and listen to the answer you will make that person feel like somebody actually cares about them and now has a sliver of insight into what they are experiencing, and this will make them feel less aloneand probably not need to keep trying to draw attention to their symptoms. In my experience when someone has taken the trouble to gain insight into what is actually going on for me (that has only happened with one person outside of my immediate family) I have found that person less draining to be with. Perhaps its because there isn't this constant mismatch between what is going on in the room, what is seen and shared, and what is going on in my body, what is invisible and ignored.
4. Do not tell someone with M.E/CFS they look well, or not so bad. How we look on the outside rarely reflects what is going on on the inside.
Someone may even appear alert but inside they may be feeling like they are slowly drowning in symptoms. So take the time to really notice how your friend seems, rather than making 'reassuring' comments. If you feel you are being crushed by symptoms being told 'yur looke good!' makes you feel worse, not better! Strangely enough there is nothing more reassuring for me than when a person says you look awful, tired or simply picks up the cue that the end of my tether is being reached energy/symptom wise and voices that observation. Once again it comes back to being seen, to being heard and to not feeling like you are invisible because no one mentions or appears to have noticed that your life does not resemble an ordinary life.
5. Be aware that engaging with human beings is probably the most energy draining thing a person with M.E/CFS can do short of actually being daft enough to try to exercise.
Most of us are not antisocial recluses by nature, it is just that we have discovered something we never realised before getting ill and that is that talking, thinking and listening - processing all that information - is one of the most energy consuming things we can do. Yet most of us miss people, miss the life we once led, miss our old friendships, and lament the fact we can not make new friendships because we have so few opportunities to do so and so little to give. But just being aware of this fact, being tuned into your friend by doing the things I have already outlined, talking calmly and listening carefully when you are with your friend and not having unrealistic expectations of what they can manage socially, will keep your friendship going and minimise the loneliness and isolation of living with this condition. Trying to encourage an open and honest dialogue between you and your friend about when things are too much for them will minimise how much their time with you drains their battery. Don't take it personally, it's not personal and please don't stop being in touch, texting, emailing, making arrangements to call round because your friend does need your friendship and is probably feeling like she doesn't have much to offer in return. So if you value your friendship make sure she knows it and just take a few minutes to think about the restrictions of her life and imagine how you would feel if your life and all your relationships were restricted in the same way.
Doing all of the above will make you an even more valued friend.