Author Skye Falcon Medical Chaos, Chronically Awesome Issues, & Information Invisible Illness Week 2015: To the Recently Diagnosed…

Invisible Illness Week 2015: To the Recently Diagnosed…

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Invisible Illness Week 2015: To the Recently Diagnosed…

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Few things in life have been as challenging as repeatedly changing your lifestyle to fit your illness. This is something I’ve done too many times in the past fifteen years. This is something that so many of my new chronically ill friends master, just as I have. This is something that not many people fully understand. While our reasons for fighting may be different, we all draw strength from the things we continue to do, attempt, and succeed at. We draw strength from each other, knowing that the “end” for one may be the beginning for another. We draw strength from those who truly need us in this life.

Multiple times a week it gets pointed out to me that I “do too much.” That I should, “take it easy, rest a little” and not “work so hard” on things. To me, that is insanity. No way I could, or would, roll over for these diseases. No way was I going to let these things force me into bed permanently, make me carry an oxygen machine, allow my hands to freeze and become unusable, or sit silently and not scream & yell or type & pound the keys to stand up and speak for some of these intense, forever illnesses that so many are dealing with daily.

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When my diagnoses came rolling in years ago, I made a conscious decision to not allow these things to rule my life. Of course, I couldn’t stop the physical changes from happening, and trying to hold back the mental outbursts and adjustments was just plain crazy. …Or maybe just made me crazier. Allowing these illnesses to rule our lives, and simply changing our lives to fit the illness, are completely different things.

Truth is, everyone has an idea, or opinion on what you should be doing. Reading. Trying. Taking. On what doctors you should be seeing, or why that specialist is a lunatic. They want to tell you about which medications you should be taking, and why the one you’re on is worthless and crap. Funny thing is, if any of this happened to any of them, they’d probably spend their first few months in a pit of despair, wondering how they fell so far off of the beaten path they’d set up for their predetermined futures.

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If you’re recently diagnosed, you need to allow yourself time to grieve the major changes you’ll need to make. Give yourself the space away from people who may not be as supportive as you’d like them to be, or those that don’t have the capacity to stand behind you, giving their full support. It’s going to take longer than two days to acclimate to your “new body” rules and requirements.

If you’re recently diagnosed, learn all you can about your new illness, and the medications they’ve prescribed for you to take. Make yourself aware of the possible side effects. Look for social media forums where people with illnesses like yours converge. It may seem silly, but these folks have seen me through the extremely tough patches in the middle of the night, and on my worst days. It’s in these places you’ll find out which side effects are real worriers, which aren’t so bad, and the truths about what some of these meds can do to a body. You’ll learn things in these groups no doctor or nurse is brave enough to tell you off the bat.

If you’re recently diagnosed, stop focusing on what you won’t be able to do. Think only of what you CAN do, and the new ways you’ll be doing the harder tasks in your life. The moment you start thinking that you can’t, you won’t be able to. Your mind is your best friend, and worst enemy with these types of sicknesses. While remaining positive all the time is also the best joke ever, finding the good parts in any circumstance will surely help to see you through. I am a pessimist, an introvert, and an angry right fighter. However, I’ve adapted to being bluntly honest with myself and others, and my illness. There is nothing I won’t attempt, still to this day, even if I know it will break me for weeks.

If you’re recently diagnosed, don’t settle with any one treatment, or one way of thinking. Many of us who have dealt with illnesses for longer than five years can tell you that things will shift, meds will suddenly stop working, your trusted and true way of doing things will eventually fail you. At these moments, if you’ve settled into “one way,” you’ll be crushed. (Similar to planning a birth….too set on one way usually ends with tears, C-sections, and plans that were not ever truly your own. Results are still the same, however.) Stick to your meds, methods and doctors as long as they’re working for you. The minute things stop working so well, don’t be discouraged or afraid to speak up. Just be ready to make the changes necessary to re-find YOUR normal.

If you’re recently diagnosed, the faster your accept it, the easier your days will be. For example, I utilize anger to my advantage. My limitations make me angry, as it affects my days with my children. While many people focus on telling me to “calm down” and “to breathe,” I find that anger pushes me to accomplish more than I ever would giving in to said anger, and letting it defeat me. Anger pushes me through publishing books, through standing in court defending my family members #justicefornancy, through having the worst most painful testing done, and through being true to myself. Everyone has a different “push,” this just happens to be mine.

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Bottom line is, you’re going to have quite a few rough days. You’re going to have a different treatment than someone with the same illnesses and ailments that you have. You’re going to need different supports, have different goals, and want different things out of your life with this illness. You’re going to want to give up….but you won’t. You’ll find the strength deep down inside that you weren’t sure existed, and you’ll shock yourself. Sure, certain days will be spent getting quality time with your comforter, and you’ll learn that that is okay, and normal. There is no correct way of dealing with any autoimmune or invisible illness. There is no set way of handling the struggles that will certainly show their ugly heads. There really is no real way to prepare you for what’s ahead other than to say, you’re not alone. One of us is always close, and only a message away.

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www.invisibleillness.com

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