Every so often a post about the things I wish you understood about Chronic Illness floats across my feed, I always read them and nod in agreement sometimes emphatically, with authority as my husband would say....for each of us that suffer there is a new list, there is a constant, and there is a fluctuating need for these posts.....and today I chose to write my own, my list of all the things I wish those around me could understand of course without having to live the agony of being trapped in a body that does not co operate.
1. Yes I am disabled, I may not look it to you, but I am. I have moments in time where I accomplish so much. I deal with my kids daily, I run my own little online business and help my husband with his, but I am still disabled, and the energy it takes me to accomplish what most take for granted is multiplied by body parts that resist changing positions, I am just really good at hiding my pain....because you may not be able to see what happens when I stand, or walk too long does not mean it is not happening to me within my body. I have a disabled parking permit, I constantly have people stare to see if I have it as I park then the look of astonishment hits them, yes I need it, yes I realize you don't see it and I hope you never feel it either.
2. Please stop telling me it could be so much worse....stop sending me links to stories of those that you feel have worse situations and illness' to deal with....I feel for everyone and wish that we could eradicate illness from the Earth, seeing others suffering "worse" than me does not make me feel better, I am an empath and it only makes me feel their pain along with mine.....it is not a competition for who feels worse or has been more affected by dis-ease, to each person that lives with Chronic conditions their life is the most affected by their illness, if you want to find a way to support us then learn about our illness, listen when we need someone to lean on, encourage us yes, don't compare us though.
3. Understand that while Depression may come hand in hand with some dis-ease and for that we should seek treatment but there are other instances where it is the direct result of living every day in pain not because we hate our lives, are unhappy or even have a chemical imbalance as some love to tell me, no anti-depressants are not required, they will not make the pain go away, nor will they eliminate the meds I require to fight for remission....what I fight is a situational depression and the situation for me is Lyme Disease and its Co-infections.....I have great days and then I have days that I wonder why I continue, today is that day.....I love my life but the constant struggle to live it can be soul crushing. I cope by sharing, blogging, creating when I can...I find beauty in Nature around me, the smiles of my children and grandchild, I laugh with my mother after years of misunderstandings, I lay in the arms of the love of my life....I cope and I love my life, but I hate dis-ease.
4. My days are full, I have a multitude of responsibilities a day that I have to take care of and people that rely on me that I also care for so I budget my energy and my time for those, even right down to snack time for the little witch, teaching him and helping him to cope with Asperger's and other issues, or taking my mother to town....some of the things I budget time for most don't even think about, they just do it...for me it requires planning, storing energy for a direct purpose and completing that purpose...and then there are the times that I require help, I have back up plans and double back up plans for those days....when I say ok no I am done now, I mean I am done now and I am going to lay down.
5. I cancel things, lunch dates, parties, movies and all manner of social engagements... I do not make deadlines, I have the best intentions but that does not mean that I live up to every commitment I make, so I have stopped making commitments.....I want to go out, I want to have an active social life, I want to go to pagan festivals, camping trips and other events but odds are I won't make it....I will beg off, or not show up and later feel horrible telling you that I just couldn't make it. It is not because I don't want to, but I will and I am sorry. Sometimes it will be anxiety that kicks in, others it will be that I just expended so much energy that I have none left to do it....or the dreaded flare has moved in and I am down for the count....
6. I talk about and share my struggle, I share what it is like, what it feels like and the effects that it has on me both physically and emotionally. I am not an attention seeker, I am sharing my life with my circle, I am raising awareness for Lyme disease, I am wanting you to understand even a small portion of my life, not so you feel sorry for me but so you get it......maybe then when you meet someone else that suffers as well you might be able to understand their side of it too...I wish to educate, not garner sympathy, but I realize also that support systems and circles of support are very important for me and for others who suffer so yes I do reach out when I need it, I try to do this without dramatization sadly though I am sure that sometimes it may come across that way.
7. This one applies to witches, pagans and the lot....Chronic illness is never a reflection of someone's magic, their worth or their ability to craft...It is a reflection of a human body that is made to eventually fail physically, it is a reflection of the chemical world we live in that has poisoned us, some suffer while others don't, not one iota of that has to do with our own inner power or ability to craft magic. Magic lives within the heart, it beats daily and many times is what keeps us around, our faith and belief in our own magics, that is the key to our very existence.
There is so much more but for now this will do, it opens the views a little wider I hope....I would love a conversation to begin, what is chronic illness like for you? what are your struggles, share them, let your voices be heard, write, tell us all.....we are all individual and because of that we all suffer differently and I for one think it is high time that sharing it does not come with admonitions of what is proper or not to share on social media, if you cannot reach out to your circle for support then why are they there?
Blessings all, may you find love and smiles in your circle.