During the last 10 years of living with ME/CFS I know what it is like to want to hide away, not want to talk to anyone and be alone, while also yearning for relief and comfort. It is so easy to get down because of our illness. We don’t want to bore people with the same old stuff we are going through, especially when all we do is moan about how unwell we feel and how little energy we have. We may feel envious that the lives of our friends or our family are going well, they have a new relationship, or their career has taken off, whilst we have had to give up our own careers and social life because we feel too unwell to partake in them.
Having ME/CFS can be so isolating and lonely. I not only lost my passions and hobbies (going to the gym to do body pump and spin classes, going to dance classes, and about to embark on a latin dance performance course), and it was extremely difficult to maintain friendships or even think about a social life when I was so poorly all of the time. I just didn’t have the physical or mental energy to go out or even talk. As much as I wanted to go out and have a social life, I just couldn’t muster up a scrap of energy to and I knew that if I did I would pay the consequences and end up in bed for days, or weeks afterwards. One of the horrible things about having ME/CFS is that our friends and family often only see us when we are having a good day, so they really do have no idea how much we struggle on our bad days.
What have I learnt?
What I have realised from long term illness and life stressors is that we all need someone to help support us. That person may be a parent or one of our siblings. They may also be a girlfriend, old friend or new. Even if we are alone and we don’t have anyone to talk to we can always turn to a counsellor, therapist, helpline, find a coach, mentor or join a programme. What happens when we reach out and connect? It doesn’t mean we have to go over our sad story again and again, but sometimes it helps to share our story just once.
When we open up and talk to someone, not only can we get some advice but we also have our limiting beliefs challenged. Sometimes the opinions of others can push our buttons (sometimes a lot!) and often we can choose to learn from these situations in some way, if we dig deep into our emotions and stay present with the feeling and discover what is causing our buttons to be pushed, but of course it is all about finding the balance between harmonizing friendships and those who just stress us out non-stop! Also through looking at things in a different context and dealing with our emotions we also learn to celebrate the good news that is shared with us by a friend or a loved one and show genuine pleasure in hearing the good fortune of others.
It is so important to consider our relationships during times of recovery and whether the people in our lives are healing for us, or are a hindrance to our health. This can mean looking after ourselves by limiting our exposure to negative or toxic relationships, or people who just make us feel drained. We can always re-introduce these changes when we feel better. We need to be our own parent and let our inner voice guide us as to whether people are good for us or not. On some level, we do tend to know because our gut feeling tells us that something isn’t right. Is your friend someone who truly sees you, or are they someone who you feel you have to keep a part of yourself hidden? Do your relationships having depth or do they feel shallow?
As we start to recover and find our healing momentum we can learn that our healing environment isn’t necessarily about not being exposed to people that stress us out (that’s a part of life, right?!), but that it is about managing these stressful situations effectively and changing our perspective and how we engage with others and how we engage in the world.
There is no denying the profound effect that social connection, or its absence, has on our well-being and our health. In connecting with others, we can experience love, comfort and nourishment and connections can set in motion the upward spiral of positivity by making us feel happy, more joyful and more enriched. We can gain support from others who have been through similar experiences by joining a support group or an online group. Finding uplifting people who have recovered from any form of illness, including remission from cancer and any other illness can have a powerful and positive impact. It can bring us hope, meaning and purpose.
It is important to remind ourselves of the value of connection and to reach out to people in a way that feels doable. It is about find a healing balance, harmony and remembering to treat ourselves with love and kindness. We all need a team – who ever that is.
Who is on your team? Who is sharing your journey with you in a positive way and who are the people or the professionals that help you when you are in crisis? Who lifts you up when you are flagging, pops round to make you soup when you can’t get off the sofa, picks your child up when you feel too ill, who pampers you when you are flagging, who inspires you, softly and lovingly challenges you and celebrates your successes?
The people who DO step forward to be by your side during long term illness are your true friends. You're blessed to find out who these people are, so love them back, love them up and show them that you care. Some people will never have this luxury; they'll spend their entire lives surrounded by people who aren't their true friends. Be grateful and cherish your true friends, and put your energy into yourself and into staying in touch and gently maintaining these relationships. Sometimes just one text to let someone know we are thinking of them can be enough.
In spending time with friends, we fill up our lives with great conversation, heartfelt caring and support, and laugh out loud fun. When we fall on hard times, friends are there to put things in perspective and help us. When we have success, they’re smiling at our good fortune. With down-to-earth, positive people in our life we will be more mindful of gratitude and doing nice things for others. We don’t just live when we have healthy friendships, we thrive.