In recent years, I’ve been part of an online support group for a chronic pain condition. I’ve been struck with the similarities between that group and those of us who have either been through infertility, or are childless (for whatever reason). It has made me think about the many other communities dealing with similar issues. Issues such as:
- Incompetent doctors who dismiss the pain of their patients because there is no evident cause, which reminded me of doctors dismissing endometriosis, or sending away ectopic pregnancy patients in pain, or doctors who don’t consider that childless people have lost anything.
- Doctors who are just uninformed, but who do little to investigate the causes and treatments of pain, or who rely on old information, or who refuse to refer patients to specialists.
- Employers who don't understand or who are not able to be flexible to meet someone's specific needs
- The outside perception that if you appear to be okay, that you are in fact okay.
- Invisible pain, whether it is physical or emotional, leads to that pain being ignored. That leads to anger of others who don't understand why you might not be able to do X or Y, and judgement that you might be shirking responsibilities.
- People who can’t deal with the pain of the family members or friends, who have no idea of the severity, who dismiss their pain, or just plain forget that you might be in pain.
- The guilt of the patient for putting their family members through a difficult time – whether that is because they can’t help around home or with children or elderly relatives because they’re in pain, because of the increased burden on their family members as a result, which compares with the guilt of depriving a partner of children, or depriving parents of possible grandchildren.
- How easy it is, when we are in pain, to take on more pain and blame ourselves, tell ourselves we are worthless, that our family and friends might be better off without us.
Does any of that sound familiar?
But the positives are the same too:
- Even while it might feel like we are alone, we really aren’t. There are communities everywhere who are supporting each other, making their members feel less alone, telling them and showing them that there are others who understand.
- Discussion and advice about how to deal with pain, and certain situations, about treatments, about doctors, providing new sources of information.
- Laughing about things that others might not understand, or just finding a moment of levity to take their attention away from their pain or grief.
- Knowing there is somewhere we can be heard without judgement or have-you-thought-about-isms or "here they go again" looks.
- Virtual hugs to others in pain, just wrapping them up in empathy.
- Role models that it will be okay, that we can survive this.
How wonderful it is
that technology today allows us to reach out and find comfort across the ether. How wonderful it is that anonymous people can often give more support than people who have known us all our lives. How wonderful it is that there are people who care, and spend their time and energy in helping others, who want to make sense of their pain by helping others. There is so much love in these communities, it gives me hope for the world when we normally see so much division.
It is wider than just these specific communities too. What it shows me is that there are so many people out there who, although they might not have the same exact diagnoses or issues that we have, can still relate to how isolating and difficult our lives can be at times. It reminds me to keep myself open and see the difficulties in the lives of others. It reminds me to stay well away from playing the Pain Olympics, because we never know what someone else is dealing with behind their smiles. It reminds me to exercise compassion. It reminds me that we are not alone. As usual, there is so much more that unites us rather than divides us.