By Ellen Smith
How many times have you been approached with that question and added statement” “How are you doing, for you look terrific.” Wondering how you could possibly look terrific with life turned upside down, you still decide to respond: “Oh fine, thank you”. Is this the real truth? Of course not. When someone asks, do you, too, respond that you are fine, not wanting to engage in the conversation that just might lead to more judgment? The real truth is we become excellent actors and actresses when living with chronic pain. Are we protecting ourselves or others from hearing the truth?
We have all had that experience of being asked and responding, without telling the real truth of life living with Invisible illnesses. What others can’t see many times is being interpreted as us being just fine. You get worn down trying to explain again what is really happening along with realizing, how many really want to hear the truth, so you clam up. Again, are we protecting ourselves or others from hearing the truth?
Life with chronic pain is a life on the roller coaster. We have many downs in the journey yet the simplest of life’s activities becomes our up on this rollercoaster, bringing joy when we are able to accomplish them. You don’t take life for granted, for those good moments are golden and so appreciated, until you then slip backwards again. Are we protecting ourselves or others from hearing the truth?
I am so tired of the medical world looking at me and saying I look just fine. Fine? I have had twenty-four surgeries, live with two incurable conditions - Ehlers-Danlos Syndrome and Sarcoidosis, and fight for quality of life daily. But it seems to make others comfortable to respond this way, so I save sharing the truth with those that really sincerely want to know. And to be honest, those people are few and far between. Everybody has something they are trying to cope with so I don’t find many individuals in my daily social interactions who want to hear all about what I face. For many years that attitude would hurt me emotionally and often irritate me to no end but I now realize through the years of opening my eyes to other’s reality, that life is not easy for anyone. We all try to make the best of what we have been given and hold on tight for the ride we are on. Are we protecting ourselves or others from hearing the truth?
What can you do to try to stay as positive as possible?
- Find your peace with life - despite your struggles, find what brings a smile to your face and fills you with happiness. You may no longer be able to do much of what you could do before, but something can still bring you emotional fulfillment to help fill those gaps. For me it is writing, advocating, both about EDS, chronic pain and cannabis. I like to share the positive activities which have served to provide a positive focus for my new adaptive lifestyle. I often discuss chronic pain and the use of cannabis, sharing about life with my service dog, gardening when possible, surrounding myself with happy people and avoiding the angry ones. Socializing with toxic people is hard for me to cope with and rapidly drains me of any positive emotion.
- Search for a form of help with pain, if possible, that helps to lighten your day. If you are having trouble finding your match, consider the DNA Drug Sensitivity Testing that will identify medications which should prove compatible with your body chemistry and thus provide some pain relief by eliminating unnecessary reactions. Until you can get a decent night’s sleep, coping with your pain may prove impossible. Rest goes a long way, so I hope you are able to find the compatible medication.
- Remind yourself that this is the life you have to live so try not to keep waiting for life to return to how it was. It is best to move forward with whatever you have to work with or you may find yourself contributing to your own suffering and never finding the joy and happiness. Your future should not be totally dominated by suffering and misery. Happiness is an attitude - we either make ourselves miserable or happy and strong. The amount of work is the same. I choose life and searching for happiness!
- Remind yourself that you are always an example to your children or family and friends, on how to take this challenge on. I am determined to have my children remember me as a fighter rather than a person just feeling sorry for myself. My Dad suffered with many forms of cancer before his death, but he set that example to still see the beauty of life and to continue caring about others up to the end.
- As silly as this might read, remember we all get something we must learn to cope with. We don’t have to like it, but we can take the challenge on in terms of what it is doing to the normalcy of our lives. In order to attempt to maintain some sense of emotional well-being, we must try to make adjustments and improvements in our lives. We can waste our time and energy on “why me?” People really don’t want to be around those whose main focus in life is their illness and undeserved bad luck, so that act needs to get cleaned up or you stand the chance of losing friends you care about. This just happens to be your challenge. Too bad we don’t get to pick what it will be!
Living with chronic pain is devastating, to say the least. Try not to beat yourself up but instead seek good support, try to adapt and inject new meaning back into your life, and attempt to learn to work with your new normal to find your happiness. This is not an easy task to take on but if you ignore your new reality with all of its challenges and obstacles, you will in all likelihood, find it impossible to move forward .I find that while at times a sense of hope may seem elusive, if I find and engage in purpose driven meaningful activities, a sense of hope can be renewed and life can make sense. Yes, we got a raw deal, but so did those with spouses or children lost, those with job losses, houses damaged by mudslides, hurricanes, fires, tornadoes, etc. There are horror stories around us and there are also stories of amazing grace and determination. Let’s all try to be the success stories learning to cope with pain and setting a positive example that life still will be lived with whatever you are given. Yes, you don’t feel like the old you, but you are living your life the best you can. I wish you strength, determination and courage to take this on.
May life be kind to you.
Ellen Lenox Smith lives in Rhode Island and is a chronic pain activist and writer for medical cannabis, Ehlers-Danlos and chronic pain for 1000 WATTS Magazine and National Pain Report.
It Hurts Like Hell! I Live With Pain– And Have a Good Life, Anyway
My Life as a Service Dog!