I actually had it in my mind to write about some of the positive things that are in my life right now and this came out instead, so I guess I needed a release of frustration, which isn't to say there aren't good things happening in my life at present, there are.
It is clear after 15 years, that to most people, I don't look sick. I have no physical deformities and besides paleness/pallor from the POTS and M.E., or the fact I don't stand up for long and if I do my hands and feet turn purple, there wouldn't be much for an outsider to see.
(On a side note however, how is it back when I went to my specialist's office, that I could almost immediately tell who was really sick with M.E. and who was accompanying them? People with M.E. look pale, and often have a hoarse tired voice and/or sore throat).
Anyways, I'm letting non-sick people off the hook on this one as I know the outward signs of this illness are subtle, especially if you're not really looking. However, when people know I'm sick, why do they have to tell me how great I look? I don't go around telling all my friends and acquaintances how great they look? Why is this a thing? Do they think by them saying I don't look sick, I should then not feel or be ill? Do they think this contradiction (that I apparently look so great and yet claim to be ill to the point of significant disability) needs to be pointed out every time they see me? That pointing out this contradiction will somehow cheer me up? "Wow, I know you're sick and everything but given how great you look...."
To get to the related pet peeve I really want to discuss - if I DO manage to force myself out to do an outing or activity, or I'm happy about something, or able to manage a social visit, friends and acquaintances use this as evidence that I must not be that sick or at least "see, you're managing". They either don't understand or believe about PEM, or they don't believe it's all that awful. How many times can I tell people that PEM is worse than the worst day of a cold or as bad as mono or influenza? At this point they either believe me or they don't.
Even worse, I have several friends that often encourage me to do more (social or work) even if it means I crash or relapse. Either they don't grasp or believe how awfully physically sick I am when I crash 36 hrs later, or it's more important to them that I follow the socially acceptable script (social, recreational, work) than that I avoid physical suffering.
As an important side note, I do have friends that "get it" to a degree. And I have friends that even encourage me to pace or not over-do. My house-mate/friend does all kinds of errands and tasks to save me energy and from subsequent crashes. Not only that, but she never complains that I then sometimes spend that energy doing recreation/fun for myself, when I could have taken care of self-maintainance tasks that she did for me with her limited time off (groceries, post office, drug store, shovelling, lawn mowing).
It's important to note though, that choosing and being encouraged to over-do are very different. Sometimes I choose to over-do in order to spend time with friends, or travel to see friends, even though I know I will crash later. This is my choice and not a pet peeve, I make a judgement that the doing or spending time with someone I love, is worth the pay-back.
Everyone is on a journey, this life-journey. For me, the all encompassing biggest challenge/obstacle I face on my journey is having to live in a sick, malfunctioning body (for the last 15 years). Not only that, but there is no way out, I've found no useful treatment and I don't even have a knowledgeable physician. And so, this awful illness colours every aspect of my life. I feel so alone sometimes navigating life while ill. Due to physical limitations I am mostly home-bound and spend an inordinate amount of time alone.
That said, I realise that every friend and acquaintance in my life has their own struggles, their own obstacles and challenges on this journey. And I probably don't always "get" these as an outsider, just like they don't really "get" mine. I probably do or say insensitive and thoughtless things. I can be pretty self-absorbed. On the one hand, I wish I had more people in my life; colleagues, friends, family, anyone.
My "people" all feel so distant right now. But it's really hard when they don't have a clue or never acknowledge this huge elephant I live with - instead they just point out or comment on the fact that they don't see the elephant. And while on the one hand I need and crave connection, alternatively I find sometimes I want to withdraw from people all together just because social stuff is so exhausting while sick/ill.
While I'm thankful and grateful that I don't look awfully sick it's a mixed blessing. Since I don't look sick, but "look so great", not only is this illness clearly invisible, but sometimes I feel invisible as well.
The voice....anyone that knows me really well they can tell instantly when I speak where I am on the spectrum of this illness for the day. I found that really interesting that you pointed it out. I hear you loud and clear. Lots of love. heather
ReplyDeleteHonestly, I think people say "you look great" because they don't know what else to say. It's kind of like when something awful happens to someone, like the death of a family member - there is this human instinct to cheer the person up by coming up with some sort of silver lining. "Well, at least he/she didn't suffer. At least you still have other children. It's God's will." Etc. I believe the "you look great" comment is ultimately based in good-heartedness. People know you're miserable and want to help in some awkward, ill-thought-out manner. It's not a direct attempt to undermine the reality of what you're going through...at least I don't think so. They genuinely believe they are saying something nice (at least you don't LOOK awful in addition to FEELING awful). I try to forgive it.
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