Reply to How do you cope with chronic disease/illness?

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[quote=Anonymous]This is such an important question to wrestle with, and as things change for you  to keep adapting your strategies.  I’ve had very complex autoimmune and immune system disorders since childhood and am in my mid 70s now.  For most of my life there wasn’t a definitive diagnosis so I had to find doctors willing to deal with the complexity i presented. I was finally diagnosed correctly only five years ago.

I think three things have made the most difference in coming to grips with the limitations I’ve faced and living a meaningful life. Maybe they can be helpful to you.   1) Allowing and fully moving through a period of grief for how life had changed/turned out. This took therapy with a clinician specializing in chronic illness.  2j Hope for the new adventures and joys that life still will bring, including hope for better healthcare, understanding doctors, etc. because that matters so much to managing as best you can at any time,  3) Cultivating relationships with people (friends, co-workers, family, healthcare providers, acquaintances) who understand and help sustain you.  Some friends and family members will never get it, treat you differently or just not be able to take it in.  You can still keep those relationships, but you have to have a few true allies where you don’t have to explain. Those people will evolve with you and sustain you in different ways.

Using these strategies, I was able to put my health challenges into a place where I was able to work at a demanding career, adopt and raise my child (with assistance) and live a very full life, though perhaps one more constrained than most people would find acceptable. Like anyone, I still have my moments of frustration, mine are just more often about what I have to do to manage my health. There is possibly one more strategy, but it has to be at the right time and be the right groups.  Patient forums, support groups, research centers for your condition can be helpful, but can also expose you to people who aren’t coping well or have extreme cases and that can be counterproductive. It’s helpful to be discerning about how you engage in those, but some can be very helpful at the right times.  I hope you are able to find a good path to managing and living well with your diagnosis.  [/quote]

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