I have had this blog post in draft form for over 2 weeks. And I have made major changes to it every single time I come back to it. I was going to try to write this inspirational, positive, amazing piece about how my illnesses have not taken over my life. About how despite the fact that I am 28 and sick with at least 8 at this point chronic invisible illnesses that doesn't matter because I know that I am not my illnesses. I saw this picture on Pinterest (I told you I spend a lot of time there) and was like "Look, the perfect graphic to go with the perfect blog post, on how I'm perfect because I've learned to realize that I'm not my illness." And it has all that has remained constant about this blog post for the past 2 weeks.
The words in this graphic are true. Oh so true. But they are also very false at the exact same time. Because you see when you are 28 with (at least) 8 different pretty severe chronic illnesses you may be MORE THAN your illnesses, but you most definitely are part of your illnesses. Or your illnesses are part of you whichever way you want to look at it. When you go from a 25 year old (the year my illnesses took over my life) who had her world turned upside down, lost her job, lost her home, lost her identity, lost her passions and hobbies to her illnesses, had to give up her "dreams" to her illnesses; to a 28 year old who is just starting to figure out how to find life again one day at a time, one moment at a time, a 1/2 mile at a time in between constant doctors appointments, IV infusions, acupuncture sessions, massage therapy, counseling, physical therapy, and more doctors appointments, while going to grad school to pursue her new "dream" all while being told she can't do it...it's hard to not believe that my illness is not there, is not part of my identity.
So, here on the 1st day of National Chronic Invisible Illness Week, let me ask you, why should healing be all about being not my illness? And if I am my illness, can I still be not my illness too? Why can't I be Meggers? Why can't I be both? Why do we spend so much time focusing on this is the sick part of me and this is the well part of me and they HAVE TO BE mutually exclusive? And why does it bother us so much that we (I) have invisible illnesses, why does it matter so much if it's visible or not?
Let me tell you what, 5 hours ago I would have answered all these questions differently. Then I went to counseling. And I found out I have some really deep seated issues about myself and my disabilities. Who would have thought? (Haha, sarcasm, joke). Anyway.
We've determined that I have some really deep issues that I haven't dealt with yet about the fact that I'm sick and I can't control it and I want to be normal and I want to do normal things because I'm stinking 28. I'm in my prime. I should be able to do all sorts of things. I should not end up in bed after standing up for 4 hours at clincials. It should not effect me for a full week. I should not be scared to go in tomorrow because I'm nervous about the effects it will have on me this next week if I'm already this severe from the past week. I am constantly fatigued.. I cannot stay awake or feel refreshed for the life of me. I'm all the time in pain, but I'm even nervous of what people think about me for that too (do they believe I'm in pain? do they think I just want drugs?) Plus, my life is a constant schedule struggle between which dr's appointment can I fit in here and what therapy I can fit there and which class can I miss because I haven't missed it yet, and can I find a ride to that appointment because it's too far away to drive too, and have I taken this med, did I forget to take that one, did I check my blood pressure, how 'bout my blood sugar?
But then, on the flip side I have my non-sick self. I am doing great things with my life. I run several support groups on Facebook for others with chronic illnesses and help support people. I am a graduate dietetics student in a competitive program with almost an all A GPA (but some A-'s so it's not quite a 4.0). I'm working on a thesis that may help provide more evidence for a possible non-narcotic pain management treatment for fibromyalgia--with diet! I play piano and bassoon when I feel well enough. I go to church and belong to a C-group to get my spiritual fill. I am still working on starting a chronic illness small group. I hang out with my friends when I can. I own a dog and a cat. I love to cook. I love having fun in safe ways that are good for me. I love pretending I'm training for a half marathon. I love developing relationships with people.
So are these two paragraphs mutually exclusive? I don't think so. I think they are totally inclusive of each other. I think that I need to figure out how to be more embracing of my illness side actually. I think I've got the advocacy, I'm gonna post this on Facebook, I'm gonna tell people what I have part down. But I don't think I've got the I'm gonna love myself because "my life as I know it is over because I have this stuff" part down. That's the part I need to work on. Personally. My counselor thinks that I perceive people as judging me all the time and pressure myself to do more than I should so that "people" aren't judging me, but that I'm really judging myself, because I'm not doing what I should be able to do as compared to others my age. That's the part I can't get past, but that's me. But that's why I say the words in that picture I posted are absolutely true, but absolutely not true at the same time. Because I am not my illness. My name is not dysautonomia, fibromyalgia, EDS, endometriosis, PCOS, celiac, colitis, possible mitochondrial disease. My name is Meggers. But those are a part of me. And I need to learn to accept that.
As a closure/side note/whatever. This is a quote from the sermon at my church this weekend. Our church is starting a church wide C-group Bible study this week and the sermon this week was on We are One. The first point on the sermon was that "He makes us unique." and he used 1 Corinthians 2:17 and then said this, and it's a direct quote...I played it back several times to get the 2x4 over the head right (our sermons are on the internet live streaming).
"He has made you unique. He hasn't made you like other people, stop worrying about it and be yourself! What if you could be comfortable in your own skin? What if you were comfortable in the skin God gave you, instead of trying to be like everyone else?"
Well ain't that the truth, Scot? If only it were that easy. I guess that's why we get a do over. And why there's a Heaven. This is my goal for this week. Trying to be more kind to my body, by not judging myself, and being comfortable in the skin God gave me. Because I am not my illness, but it is a part of me.