From InterAction 118, published Winter 2024
Q. I am due to stay with family over the Christmas period. Some of my relatives are very dismissive of my ME. I’m not sure I want to go, but it’s the one time of year I see them. How do I manage their disbelief?
A. This is a difficult subject and, sadly, impacts many in the ME community. Doubt and lack of understanding in any situation is hard. When it comes from loved ones, it causes extra hurt. The festive period can be such a muddle of feelings – loud and quiet, joy and sadness. Many people with ME find it a lonely time. This not always being alone physically, but of not feeling seen, heard or understood.
Making the best decision for you
There can be pressure at Christmas to be with family or friends, to be jolly and bright. If you are unsure you want to stay with relatives, it’s important to listen to your gut. Weigh up the pros and cons of the benefits versus the impact on your symptoms and wellbeing. If you do decide not to go, feel reassured that you have made the best decision for yourself.
Coping with disbelief when staying with relatives
It could be helpful to have an ME ally or friend who you can contact whilst away. You can reach out to a helpline such as Samaritans on 116 123 (available 24 hours) or SHOUT, via text, on 85258.
It can be very hard to navigate explaining ME to people. It may be best to stick with some key phrases which you can repeat when needed.
“I need to manage my energy to help me be as well as possible, so I’m going to rest now but I look forward to seeing you later.”
“I need to rest somewhere quiet, so I’m going to spend some time in my room.”
“My earplugs help me when I’m finding the television too loud. I’m happy for you to watch a film whilst I sit here, they just filter some of the sound to prevent me feeling unwell.”
“Don’t worry that I’m missing out. I’m very glad of the time I’m getting to spend with you by putting things in place to help me do so.”
“When you dismiss my ME, I find it really hard. It’s a real illness. I didn’t choose it and it’s very hard to live with. I hope that you respect me enough to try and accept this.”
It’s important to remember you are not responsible for other people’s behaviour. Other people’s lack of belief is not a reflection of your truth. If you don’t have energy to explain, don’t feel compelled to do so.
"Other people’s lack of belief is not a reflection of your truth"
Being prepared
Are there portable aids which help you to manage your energy in a potentially challenging environment? If so, it could be worth making a list of any everyday items you use so that you remember to pack them.
You could find out where you will be sleeping/staying at your host’s house so that you can guarantee a ‘safe space’ to escape to when required. You could also ask if there are any events or meals they are planning in the time you are staying. This will allow you to work out whether you are able to attend these (and whether you want to!) and also to factor in rest before and after as needed.
Once you have a rough idea, it is worth letting family know that you will be attending certain events and not others, so that they are aware in advance.
Permission to care for yourself
Allow yourself permission to leave the room as needed, even if others don’t understand. You are allowed to prioritise your health and wellbeing. Put yourself first as best you can over the festive period. ME is real. You live it every day and you are an expert in your own condition. People with ME face so much doubt in general, but you can go forward with integrity. Remind yourself what it’s taken you to be there. Allow space to nourish your wellbeing on your return home.
