The subject of dealing with relationships and the ME/CFS experience is a big topic. It can be become one of the most difficult areas to negotiate, and at times, even more stressful than being ill! It was perhaps one of the most difficult themes for me to tackle, because I experienced such loneliness when I couldn’t maintain my previous level of social life, or what I felt was my responsibility and commitment to others needs.
You may workout quite quickly who will remain by your side through this journey and who won’t. This is a harsh truth but the quicker you come to accept that it may become too tiresome or even impossible for you to do any, “keeping up appearances”, the better you will adapt to the change and maybe even a temporary hole in your family or friend circle. A lot of it will also depend how close or authentic your relationships were before you got ill and many of mine were not based on me being quite my true self. Not everyone will feel such loss, but nearly everyone I have spoken or heard talk about this subject regards ME/CFS, does experience at least some rejection or necessary change in the people around them whilst trying to get well.
You may try to keep up with certain person contact but the simple fact is when you are so ill your life changes and therefore it can lead to the stark realisation that just because your life is on hold, other people’s aren’t I’m afraid! You may then come to understand something even more painful, you just aren’t considered fun to be around anymore, or at the moment at least and it can be hard for people to relate to something that isn’t that well understood, even in the medical community.
I’m sad to now say, that a few years before this enlightening chapter of my life, I had at least three clients with ME/CFS visit me for sessions or workshops, and I equally found myself being somewhat internally judgemental of them. I simply could not comprehend at that point in my life, how someone could be so ill or lacking of vital life force, that they would need to take about ten breaks up a single flight of stairs. Now, it is perfectly easy for me to understand, and I even have some of understanding of the scientific / biological reasons behind it too!
The world can be cruel, and there are a lot of people that won’t be able to relate or want to even know about someone who is in a place of a grate deal of suffering. This can make for quite a nasty cocktail of loneliness and depression if you allow it to swallow you. Coming to be your own new best friend will become your path to salvation, throughout, and it’s one you can come back to time and time again. Maybe you’ll also find it easier if you don’t do as I did, and keep trying to get your needs met from outside of yourself. Loving yourself, even when you may not be able to work, feel you are contributing much to the world, or even the lives of those around you, will be fundamental to your path of transformation from this M.E. experience.
I’ve spoken to lots of people with ME/CFS, some who were single, married, and or had children but the theme seems the same, that even if you have lots of people aroud you, you will at some point feel very alone.
Many relationships, you may even come to learn, are simply not norishing for you anymore anyway. You will be changing a lot, in addition to trying to heal your body, so you may not feel the same type of connection to those you were more similar with before you got unwell.
You may be lucky however to have one or two people who will travel with you throughout the journey. These will be people you can simply be the most ill with. They won’t force you to put on an act and you will not feel further drained from trying to please or pretend you are ok. My best friend Emma actually taught me that I could be ill around her. She didn’t come out and say it, I just trusted her enough to let go and let her help out and cook us lunch when she came over. This is a sign of a true friendship. It did help of course that she is a calm person. In fact when learning to be a new way, one where I was less of a fast paced, “doer”, hanging out with people who’s inner qualities and approaches you are trying to adopt can be incredibly helpful.
Needing to have others understand can become a drain. I wanted for a long time, to have my husband understand what was happening inside or what I was feeling. I guess I didn’t want to feel the divide between us, however when I came to accept that he could never quite know what they experience was like, then it allowed me to get on with things. He was always there to give me a fireman’s lift up the apartment stairs to the car, or push me, normally too fast around in the wheelchair and that was more than enough!
Having a mixture of relationships is important to any life and if you can make some friends who have had, or who are trying to recover from ME/CFS as well as your regular friendships then this can be helpful. I chose to avoid support groups which I thought were negative and filled with what I call “woundology”, but I did attend some positively framed workshops and events with people who could uplift me.
Take the good bits from people who are caring and can sustain a two way realtionship but don’t feel bad about letting go or spending less time with any people who you think are adding to your difficulties. You’ll know which is which when you feel into it.