Are you there?

Hello? Are you there? No, are you REALLY there? You are now but would you still be there if I told you I have an incurable disease? Would you still be there if I told you I had chronic pain associated with my illness? Would you? No, really, seriously, would you be there? Would you be there for me? For a friend? For a family member? For a coworker? For a stranger? Think about it.

If you have never been diagnosed with something so incurable or lived with pain every single day. Just imagine how lonely that person may feel. They hurt so they have to cancel scheduled or even last minute events. They have a bad immune system so they can't always be out around a bunch of people. Would you still be there for that person? Would you invite them over to hang out? Would you go to their house to hang out with them if they are unable to come to you? Would you?

“Part of what makes pain “painful” is its privacy and unsharability, the feeling of aloneness,” says David Biro, M.D., Ph.D., author of Listening to Pain: Finding Words, Compassion, and Relief. “This under appreciated feature — to that outsider, that is — is especially true for pain that persists, chronic versus acute pain.”

"Pain inverts our normal perspective," says David Biro. "Instead of reaching out to other people in work or play, we turn inward and self protective. This is an instinctive, understandable response. Something is wrong inside of me and so I must attend and focus on the threat and make sure it doesn't get any worse." To those with these illnesses, we may withdraw or distance ourselves from the world or even those we love, further isolating ourselves.

I was talking to my counselor the other night and was telling her how I felt disconnected. Those that surround me at home understand because they too either know someone with similar illnesses or have the illness themselves. Those that surround me daily at work, they say they understand but I've been told that discussing my illness can be "too much" and "constant" and they "don't want to hear about it anymore". They say they understand how I feel but do they truly? 

You will feel even more disconnected and lonely when those around you start questioning or judging your illness. I guess it more causes you to feel misunderstood. We don't want pity. We just want understanding. It is understandable on another level that without direct experience, others can't comprehend what you go through on a daily basis. Without that understanding or comprehension, your isolation further increases because you feel as those around you are reluctant to understand and so you just start to slip away from them. 

“Chronic pain can affect the roles people have. They miss out on children’s activities, family functions, and parties with friends,” says Murray J. McAllister, PsyD, executive director of the Institute for Chronic Pain.  “As a result, many people struggle with guilt. Guilt isn’t the only emotion that is common to living with chronic pain. Patients tend to report a combination of fear, irritability, anxiety and depression." This is one thing I am currently trying to work on through counseling. I feel a lot of guilt and now with all the medications, I have the feelings of anxiety as well as depression because I am not the same person I was before. Now that I know talking about my illness can be annoying for some, it makes me more depressed than before. I feel I have lost friends. 

What I am trying to get at is that if you have a friend or family member suffering from any chronic illness or any dibilitating disease, all they ask is your support. We don't need pity. We don't need to be judged. And last thing we need is to be told we are annoying and that we talk too much about the issue at hand. Have you maybe thought that we talk about it to spread awareness so those that don't know about it will learn and maybe one day there will be a cure. The one thing we pray every day for....a cure. Another thing we pray for every day...support and understanding. 

Are you there? Are you really there? Think about it.