I was just messaging a friend (and I do consider people I meet through facebook support groups friends, as they are often the people who understand me in ways that others can't, and provide so much support and kindness I can't think why I wouldn't consider them friends, even if I may never meet them in person!) I met on the facebook Myofascial PAIN Support group about 'stuff', and it occurred to me just how important it is for people suffering from chronic illnesses to ‘find their tribe’.
The world can very quickly become a very lonely place when you suffer from chronic pain. Employers, doctors, and sometimes friends and family, don’t always understand us, or want to deal with us. We may also be restricted physically, which limits how much we get out, and the levels of human interaction we are getting. Financial constraints can also mean missing out on social events and limit the amount of socialising in general we can do. It can also be a very confusing and overwhelming place - jobs are lost, and reduced income means constant financial worries; we don’t know what is going on with our body, and getting a correct diagnosis can be an endless and exhausting endeavour; medications can cause nasty side effects, including at times impacting cognitive abilities: relationships suffer, and people who we used to think of as friends become distant….the list is endless. But if you find your tribe, guaranteed there will be others who have experienced similar difficulties, who can truly understand and empathise, and offer advice, if advice is sought. This can turn feeling totally despairing and isolated, with no where, and no one to turn to, in to despairing, but knowing you are supported through whatever it is you are going through, by people who have been through similar experiences.
The first facebook group I joined was Chronic Pain Support International, and I will be eternally thankful to this group for the support, kindness and wealth of information the wonderful members there have provided. Not only do I interact with members there on a regular basis, I have also poured my heart out to them in my darkest hours, and they were there for me. And I know they would be there again if I needed them, and knowing that, knowing I can depend on them, is invaluable. Because knowing you are not the only person to be suffering from chronic pain isn't enough at times, you need to connect with others; to share, to vent, to breakdown, and be picked up, by others; to be the one doing the picking up, of others, because you know what it feels like to be at the end of your rope, and just to want the suffering to end. They are my tribe, as are the members of the Myofascial PAIN Support facebook group, who have provided me with a level of insight into Myofascial Pain Syndrome / Chronic Myofascial Pain that I couldn't have got elsewhere, on top of being a wonderfully caring and supportive community.
So, although there are many things I could suggest to someone who is just coming to terms with having a chronic illness, or feeling isolated due to a chronic illness, I think finding support from your peers / finding your tribe may be one of the most important things I have found in my journey so far. And ultimately, that is what HealthUnlocked is all about - uniting people who have illnesses to allow them to share experiences and to receive and offer support.
What has been your experience with peer support? Do you have a local support group that you are part of, or have you found peer support online ? I would love to hear your thoughts and experiences, so please comment and share your story.